This paper, an ethnographic study using grounded theory, explores the meanings of “home” and “car... more This paper, an ethnographic study using grounded theory, explores the meanings of “home” and “care” for residents in an assisted living facility. The narratives of residents and staff in the setting are analyzed using the theoretical concepts of the abstract and concrete meanings of home as outlined by Groger (1995). This study finds that unlike in a nursing home, an
Background and Purpose Although the optimal length of hospice service has not been defined, lengt... more Background and Purpose Although the optimal length of hospice service has not been defined, length of stay may be an indicator of the quality of care, with greater length of stay suggesting better quality of care. Therefore, referral sooner rather than later in a person's illness is preferable. Race/ethnicity has been associated with different patterns of hospice services. The purpose of this study was to examine factors associated with length of hospice service. In particular, the study assessed whether race/ethnicity modified any observed relationships between gender, primary caregiver, diagnosis, referral source, or payment type and the length of hospice service (i.e., time to death). Methods The study included a total of 16,323 older patients (age 65 and older; Mage = 81.4, SD = 8.3) served by a hospice in Florida, during a four-year period, 2002-2006. Of these, 83.5% were Whites, 7.6% were African Americans, and 8.9% were Hispanics. Survival analyses were conducted using th...
: This study explored the following issues related to pain management among nursing home (NH) res... more : This study explored the following issues related to pain management among nursing home (NH) residents: 1) communication patterns be-tween NH residents and certified nursing assistants (CNAs) about pain; 2) how race and ethnicity influence NH residents' pain experi-ences; and 3) CNAs' personal experiences with pain that may affect their empathy toward the resident's pain experience. The study con-sisted of a convenience sample of four focus groups (n ¼ 28) from a NH in central Florida. A content analysis approach was used. Data were analyzed with the use of Atlas.ti version 6.2. The content analysis identified four main themes: 1) attitudes as barriers to communica-tion about resident pain care; 2) cultural, religious, and gender in-fluences of resident pain care by CNAs; 3) the role of empathy in CNAs care of residents with pain; and 4) worker strategies to detect pain. Attitudes among CNAs about resident cognitive status and perceived resident burden need to be recogn...
There has been growing concern about racial and ethnic disparities in completion rates of advance... more There has been growing concern about racial and ethnic disparities in completion rates of advance directives (ADs) in community-dwelling older populations. Although differences in AD completion rates between non-Hispanic whites and African Americans have been reported, not much is known about the awareness and completion of ADs in other groups of ethnic minorities. Using a sample of community-dwelling Korean-American older adults (n = 675) as a target, factors associated with their awareness and completion of ADs were explored. Guided by Andersen's behavioral health model, predisposing (age, sex, marital status, education), need (chronic conditions, functional disability), and enabling (health insurance, acculturation) variables were included in the separate logistic regression models of AD awareness and AD completion. In both models, acculturation was found to be a significant predictor; those who were more acculturated were more likely to be aware of ADs and to have completed ...
To determine the extent to which structures and processes of care in multilevel settings (indepen... more To determine the extent to which structures and processes of care in multilevel settings (independent living, assisted living, and nursing homes) result in stigma in assisted living and nursing homes. Ethnographic in-depth interviews were conducted in 5 multilevel settings with 256 residents, families, and staff members. Qualitative analyses identified the themes that resulted when examining text describing either structures of care or processes of care in relation to 7 codes associated with stigma. Four themes related to structures of care and stigma were identified, including the physical environment, case mix, staff training, and multilevel settings; five themes related to processes of care and stigma, including dining, independence, respect, privacy, and care provision. For each theme, examples were identified illustrating how structures and processes of care can potentially promote or protect against stigma. In no instance were examples or themes identified that suggested the s...
The aim of this study was to examine the association of religiosity and spirituality with fear of... more The aim of this study was to examine the association of religiosity and spirituality with fear of death and death acceptance attitudes in chronically ill older adults. In-home interviews were conducted with 257 community-dwelling elders with chronic illness identified through an administrative database of ambulatory care clinics from an academic health center in Kansas City and through primary care practices participating in a practice-based research network in North Carolina. Hierarchical regression models were constructed for predictor variables and the outcomes of fear of death and approach acceptance of death attitudes. Self-efficacy beliefs (b = -.097, p < .001), anxiety (b = .026, p < .01), and physical functioning (b = .015, p < .01) were significantly associated with fear of death attitudes. Self-reported religiosity (b = -.389, p < .001), closeness to God (b = -.595, p < .001), and age (b = -.019, p < .001) contributed significantly to the variance in the final model and were significantly associated with approach acceptance of death attitudes.
Journal of the American Medical Directors Association, 2012
Objective: This study examined the impact of hospice enrollment on the probabilities of hospital ... more Objective: This study examined the impact of hospice enrollment on the probabilities of hospital and nursing home admissions among a sample of frail dual-eligible assisted living (AL) residents. Design: The study used a retrospective cohort design. We estimated bivariate probit models with 2 binary outcome variables: any hospital admissions and any nursing home admissions after assisted living enrollment. Setting: A total of 328 licensed AL communities accepting Medicaid waivers in Florida. Participants: We identified all newly admitted dual-eligible AL residents in Florida between January and June of 2003 who had complete state assessment data (n ¼ 658) and followed them for 6 to 12 months. Measurements: Using the Andersen behavioral model, predisposing (age, gender, race), enabling (marital status, available caregiver, hospice use), and need (ADL/IADL, comorbidity conditions, and incontinence) characteristics were included as predictors of 2 binary outcomes (hospital and nursing home admission). Demographics, functional status, and caregiver availability were obtained from the state client assessment database. Data on diagnosis and hospital, nursing home, and hospice use were obtained from Medicare and Medicaid claims. Death dates were obtained from the state vital statistics death certificate data. Results: The mean age of the study sample was 81.5 years. Three-fourths were female and 63% were White. The average resident had a combined ADL/IADL dependency score of 11.49. Fifty-eight percent of the sample had dementia. During the average 8.9-month follow-up period, 6.8% were enrolled in hospice and 10.2% died. Approximately 33% of the sample had been admitted into a hospital and 20% had been admitted into a nursing home. Bivariate probit models simultaneously predicting the likelihood of hospital and nursing home admissions showed that hospice enrollment was associated with lower likelihood of hospital (OR ¼ 0.24, P < .01) and nursing home admissions (OR ¼ 0.56, P < .05). Significant predictors of hospital admissions included higher Charlson Comorbidity Index score and incontinence. Predictors of nursing home admissions included higher Charlson Comorbidity Index score, the absence of available informal caregiver, and incontinence. Conclusions: Hospice enrollment was associated with a lower likelihood of hospital and nursing home admissions, and, thus, may have allowed AL residents in need of palliative care to remain in the AL community. AL providers should support and facilitate hospice care among older frail dual-eligible AL residents. More research is needed to examine the impact of hospice care on resident quality of life and total health care expenditures among AL residents.
OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assist... more OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/ AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents. DESIGN: After-death interviews. SETTING: Stratified random sample of 230 long-term care facilities in four states. PARTICIPANTS: Staff (n 5 674) and family (n 5 446) caregivers for dying residents. MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment. RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n 5 331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa 5 À 0.043-0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care. CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life. J Am Geriatr Soc 56:91-98, 2008.
OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the qua... more OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care. DESIGN: After-death interviews. SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states. PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents. MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea. RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P 5.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P 5.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities. CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life. J Am Geriatr Soc 56:683-688, 2008.
OBJECTIVES: To estimate the sensitivity, specificity, and reliability of the Minimum Data Set Cog... more OBJECTIVES: To estimate the sensitivity, specificity, and reliability of the Minimum Data Set Cognition Scale (MDS-COGS) in screening for undetected dementia when completed by direct care staff in residential care/assisted living (RC/AL) facilities and secondarily to determine the prevalence of dementia in the sample. DESIGN: A cross-sectional study in which staff were trained to complete the MDS-COGS. Research interviewers and a neuropsychologist obtained information on each participant. Two neurologists reviewed the data and examined the participant, rendering a probable diagnosis of dementia/non-dementia diagnosis. MDS-COGS results were compared with the neurologists' determination. SETTING: Fourteen RC/AL facilities in North Carolina. PARTICIPANTS: Data were collected from 50 staff on 166 residents without a diagnosis of dementia. MEASUREMENTS: In addition to the MDS-COGS, measures included a comprehensive neuropsychological battery. Depression and other neuropsychiatric symptoms were also assessed. RESULTS: Neurologists determined that 38% of participants had probable dementia. An MDS-COGS cutpoint of 2 was highly specific (0.97) but not very sensitive (0.49) for dementia. Test-retest and interrater agreement for a negative screen were high (88% and 93%, respectively). CONCLUSION: The MDS-COGS is a simple, brief screen that RC/AL staff can complete. It will identify with high specificity a subset of residents with undetected dementia, allowing rapid identification of those likely to need dementia care. Caution needs to be exercised in light of its low sensitivity, because some with milder dementia will not be detected. Further work is needed to determine whether staff can and will use the MDS-COGS as a trigger for morethorough assessment and to guide care and improve outcomes. J Am Geriatr Soc 55: 1349-1355, 2007.
Objective: Patients and palliative care experts endorse the importance of spiritual care for seri... more Objective: Patients and palliative care experts endorse the importance of spiritual care for seriously ill patients and their families. However, little is known about spiritual care during serious illness, and whether it satisfies patients' and families' needs. The objective of this study was to describe spiritual care received by patients and families during serious illness, and test whether the provider and the type of care is associated with satisfaction with care.
International Journal of Geriatric Psychiatry, 2010
Objective: The purpose of this study was to examine risk of nursing home (NH) placement among old... more Objective: The purpose of this study was to examine risk of nursing home (NH) placement among older adults receiving publicly funded home and community-based services (HCBS) or assisted living (AL) and to explore whether these settings of care modify the relationship between dementia and risk of NH placement. Methods: The sample consisted of dually eligible Medicare and Medicaid beneficiaries age 65 and older who received HCBS (n ¼ 1630) or resided in AL (n ¼ 836) in Florida between July 1999 and June 2000. Cox proportional hazards regression was used to estimate risk of NH placement over a 5-year study period and to test the interaction of setting of care by dementia status. Results: In all, 15% of HCBS participants were placed in a NH compared to 26% of AL participants. As indicated by a significant interaction term in the regression model, setting of care modified the relationship between dementia and NH placement (HR ¼ 0.45, CI ¼ 0.31-0.66). In post hoc analyses stratified by setting of care, dementia was associated with a 50% increased risk of NH placement from HCBS (HR ¼ 1.50, CI ¼ 1.12-2.02) but was not associated with placement from AL (HR ¼ 0.86, CI ¼ 0.63-1.16). Conclusion: The findings suggest that differences in care provided in HCBS and AL may influence subsequent NH placement for older adults with dementia.
High turnover of nursing assistants (NAs) has implications for the quality of nursing home care. ... more High turnover of nursing assistants (NAs) has implications for the quality of nursing home care. Greater understanding of correlates of NA turnover is needed to provide insight into possible retention strategies. This study examined nursing home organizational characteristics and specific job characteristics of staff in relation to turnover of NAs. Cross-sectional data on 944 nationally representative nursing homes were derived from the 2004 National Nursing Home Survey. Using a 3-month turnover rate, 25% of the facilities with the lowest turnover rates were classified as low turnover, 25% of the facilities with the highest turnover were classified as high turnover, and the remaining 50% of the facilities were classified as moderate turnover. Multinomial logistic regression was used to examine organizational and job characteristics associated with low and high turnover compared with moderate turnover. One organizational characteristic, staffing levels at or greater than 4.0 hours per patient day, was associated with greater odds of low NA turnover and reduced odds of high NA turnover. Job characteristics including higher wages and union membership were associated with greater odds of low NA turnover, whereas wages, fully paid health insurance, employee assistance benefits, and involvement in resident care planning were associated with reduced odds of high NA turnover. The results of this study suggest that job characteristics of NA staff may be particularly important for turnover. Specifically, the provision of competitive wages and benefits (particularly health insurance) and involvement of NAs in resident care planning could potentially reduce NA turnover, as could maintaining high levels of nurse staffing.
Purpose: This study explored aspects of stigmatization for older adults who live in residential c... more Purpose: This study explored aspects of stigmatization for older adults who live in residential care or assisted living (RC-AL) communities and what these settings have done to address stigma. Design and Methods: We used ethnography and other qualitative data-gathering and analytic techniques to gather data from 309 participants (residents, family and staff) from six RC-AL settings in Maryland. We entered the transcript data into Atlas.ti 5.0. We analyzed the data by using grounded theory techniques for emergent themes.
Purpose: The purpose of this study was to compare the sociodemographics, self-rated health, and i... more Purpose: The purpose of this study was to compare the sociodemographics, self-rated health, and involvement levels of family caregivers of residents with dementia in residential care/assisted living (RC/ AL) versus nursing home settings. Design and Methods: We conducted telephone interviews with the family caregivers most involved with 353 residents of 34 residential care and 10 nursing home facilities. We measured involvement by caregiver self-report of monthly out-of-pocket spending, involvement and burden ratings, and the frequency of engaging in eight specific care activities. Open-ended questions elicited areas in which caregivers preferred different involvement and ways the facility could facilitate involvement. Results: Nursing home caregivers rated their health poorer than RC/AL caregivers, but there were no sociodemographic differences between the two. RC/AL caregivers rated both their perception of involvement and burden higher and engaged more frequently in monitoring the resident's health, wellbeing, and finances than did nursing home caregivers, although the reported time spent per week on care did not differ. Implications: RC/AL and nursing home caregivers to residents with dementia may tailor their care to fit the needs of the resident and setting. Results are discussed in relation to the Congruence Model of Person-Environment Fit.
This special issue of The Gerontologist is sponsored through a generous grant from the Alzheimer'... more This special issue of The Gerontologist is sponsored through a generous grant from the Alzheimer's Association. Recognition and thanks are sent to the staff, residents, and families participating in the Collaborative Studies of Long-Term Care (CS-LTC) and to all of those who devote their efforts to the quality of life and quality of care in assisted living and nursing homes.
This article examines associations between nursing home structural and process characteristics an... more This article examines associations between nursing home structural and process characteristics and presence of advance directives and trends over 5 years of advance directives in Florida nursing homes. Our results underscore the importance of nursing homes' processes in facilitating discussions of nursing home residents' end-of-life care preferences.
Fieldnotes, the subject of some recent scholarly interest in sociology (Emerson, Fretz, and Shaw ... more Fieldnotes, the subject of some recent scholarly interest in sociology (Emerson, Fretz, and Shaw 1995) and anthropology (Sanjek 1990a) are the means by which fieldworkers come to grips with the other, the data of their ethnographies. Although there is some sentiment for ...
To examine the attitudes of residential care/assisted living (RC/AL) and nursing home (NH) admini... more To examine the attitudes of residential care/assisted living (RC/AL) and nursing home (NH) administrators toward hospice and to assess facility and administrator characteristics related to those attitudes.
This paper, an ethnographic study using grounded theory, explores the meanings of “home” and “car... more This paper, an ethnographic study using grounded theory, explores the meanings of “home” and “care” for residents in an assisted living facility. The narratives of residents and staff in the setting are analyzed using the theoretical concepts of the abstract and concrete meanings of home as outlined by Groger (1995). This study finds that unlike in a nursing home, an
Background and Purpose Although the optimal length of hospice service has not been defined, lengt... more Background and Purpose Although the optimal length of hospice service has not been defined, length of stay may be an indicator of the quality of care, with greater length of stay suggesting better quality of care. Therefore, referral sooner rather than later in a person's illness is preferable. Race/ethnicity has been associated with different patterns of hospice services. The purpose of this study was to examine factors associated with length of hospice service. In particular, the study assessed whether race/ethnicity modified any observed relationships between gender, primary caregiver, diagnosis, referral source, or payment type and the length of hospice service (i.e., time to death). Methods The study included a total of 16,323 older patients (age 65 and older; Mage = 81.4, SD = 8.3) served by a hospice in Florida, during a four-year period, 2002-2006. Of these, 83.5% were Whites, 7.6% were African Americans, and 8.9% were Hispanics. Survival analyses were conducted using th...
: This study explored the following issues related to pain management among nursing home (NH) res... more : This study explored the following issues related to pain management among nursing home (NH) residents: 1) communication patterns be-tween NH residents and certified nursing assistants (CNAs) about pain; 2) how race and ethnicity influence NH residents' pain experi-ences; and 3) CNAs' personal experiences with pain that may affect their empathy toward the resident's pain experience. The study con-sisted of a convenience sample of four focus groups (n ¼ 28) from a NH in central Florida. A content analysis approach was used. Data were analyzed with the use of Atlas.ti version 6.2. The content analysis identified four main themes: 1) attitudes as barriers to communica-tion about resident pain care; 2) cultural, religious, and gender in-fluences of resident pain care by CNAs; 3) the role of empathy in CNAs care of residents with pain; and 4) worker strategies to detect pain. Attitudes among CNAs about resident cognitive status and perceived resident burden need to be recogn...
There has been growing concern about racial and ethnic disparities in completion rates of advance... more There has been growing concern about racial and ethnic disparities in completion rates of advance directives (ADs) in community-dwelling older populations. Although differences in AD completion rates between non-Hispanic whites and African Americans have been reported, not much is known about the awareness and completion of ADs in other groups of ethnic minorities. Using a sample of community-dwelling Korean-American older adults (n = 675) as a target, factors associated with their awareness and completion of ADs were explored. Guided by Andersen's behavioral health model, predisposing (age, sex, marital status, education), need (chronic conditions, functional disability), and enabling (health insurance, acculturation) variables were included in the separate logistic regression models of AD awareness and AD completion. In both models, acculturation was found to be a significant predictor; those who were more acculturated were more likely to be aware of ADs and to have completed ...
To determine the extent to which structures and processes of care in multilevel settings (indepen... more To determine the extent to which structures and processes of care in multilevel settings (independent living, assisted living, and nursing homes) result in stigma in assisted living and nursing homes. Ethnographic in-depth interviews were conducted in 5 multilevel settings with 256 residents, families, and staff members. Qualitative analyses identified the themes that resulted when examining text describing either structures of care or processes of care in relation to 7 codes associated with stigma. Four themes related to structures of care and stigma were identified, including the physical environment, case mix, staff training, and multilevel settings; five themes related to processes of care and stigma, including dining, independence, respect, privacy, and care provision. For each theme, examples were identified illustrating how structures and processes of care can potentially promote or protect against stigma. In no instance were examples or themes identified that suggested the s...
The aim of this study was to examine the association of religiosity and spirituality with fear of... more The aim of this study was to examine the association of religiosity and spirituality with fear of death and death acceptance attitudes in chronically ill older adults. In-home interviews were conducted with 257 community-dwelling elders with chronic illness identified through an administrative database of ambulatory care clinics from an academic health center in Kansas City and through primary care practices participating in a practice-based research network in North Carolina. Hierarchical regression models were constructed for predictor variables and the outcomes of fear of death and approach acceptance of death attitudes. Self-efficacy beliefs (b = -.097, p < .001), anxiety (b = .026, p < .01), and physical functioning (b = .015, p < .01) were significantly associated with fear of death attitudes. Self-reported religiosity (b = -.389, p < .001), closeness to God (b = -.595, p < .001), and age (b = -.019, p < .001) contributed significantly to the variance in the final model and were significantly associated with approach acceptance of death attitudes.
Journal of the American Medical Directors Association, 2012
Objective: This study examined the impact of hospice enrollment on the probabilities of hospital ... more Objective: This study examined the impact of hospice enrollment on the probabilities of hospital and nursing home admissions among a sample of frail dual-eligible assisted living (AL) residents. Design: The study used a retrospective cohort design. We estimated bivariate probit models with 2 binary outcome variables: any hospital admissions and any nursing home admissions after assisted living enrollment. Setting: A total of 328 licensed AL communities accepting Medicaid waivers in Florida. Participants: We identified all newly admitted dual-eligible AL residents in Florida between January and June of 2003 who had complete state assessment data (n ¼ 658) and followed them for 6 to 12 months. Measurements: Using the Andersen behavioral model, predisposing (age, gender, race), enabling (marital status, available caregiver, hospice use), and need (ADL/IADL, comorbidity conditions, and incontinence) characteristics were included as predictors of 2 binary outcomes (hospital and nursing home admission). Demographics, functional status, and caregiver availability were obtained from the state client assessment database. Data on diagnosis and hospital, nursing home, and hospice use were obtained from Medicare and Medicaid claims. Death dates were obtained from the state vital statistics death certificate data. Results: The mean age of the study sample was 81.5 years. Three-fourths were female and 63% were White. The average resident had a combined ADL/IADL dependency score of 11.49. Fifty-eight percent of the sample had dementia. During the average 8.9-month follow-up period, 6.8% were enrolled in hospice and 10.2% died. Approximately 33% of the sample had been admitted into a hospital and 20% had been admitted into a nursing home. Bivariate probit models simultaneously predicting the likelihood of hospital and nursing home admissions showed that hospice enrollment was associated with lower likelihood of hospital (OR ¼ 0.24, P < .01) and nursing home admissions (OR ¼ 0.56, P < .05). Significant predictors of hospital admissions included higher Charlson Comorbidity Index score and incontinence. Predictors of nursing home admissions included higher Charlson Comorbidity Index score, the absence of available informal caregiver, and incontinence. Conclusions: Hospice enrollment was associated with a lower likelihood of hospital and nursing home admissions, and, thus, may have allowed AL residents in need of palliative care to remain in the AL community. AL providers should support and facilitate hospice care among older frail dual-eligible AL residents. More research is needed to examine the impact of hospice care on resident quality of life and total health care expenditures among AL residents.
OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assist... more OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/ AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents. DESIGN: After-death interviews. SETTING: Stratified random sample of 230 long-term care facilities in four states. PARTICIPANTS: Staff (n 5 674) and family (n 5 446) caregivers for dying residents. MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment. RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n 5 331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa 5 À 0.043-0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care. CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life. J Am Geriatr Soc 56:91-98, 2008.
OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the qua... more OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care. DESIGN: After-death interviews. SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states. PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents. MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea. RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P 5.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P 5.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities. CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life. J Am Geriatr Soc 56:683-688, 2008.
OBJECTIVES: To estimate the sensitivity, specificity, and reliability of the Minimum Data Set Cog... more OBJECTIVES: To estimate the sensitivity, specificity, and reliability of the Minimum Data Set Cognition Scale (MDS-COGS) in screening for undetected dementia when completed by direct care staff in residential care/assisted living (RC/AL) facilities and secondarily to determine the prevalence of dementia in the sample. DESIGN: A cross-sectional study in which staff were trained to complete the MDS-COGS. Research interviewers and a neuropsychologist obtained information on each participant. Two neurologists reviewed the data and examined the participant, rendering a probable diagnosis of dementia/non-dementia diagnosis. MDS-COGS results were compared with the neurologists' determination. SETTING: Fourteen RC/AL facilities in North Carolina. PARTICIPANTS: Data were collected from 50 staff on 166 residents without a diagnosis of dementia. MEASUREMENTS: In addition to the MDS-COGS, measures included a comprehensive neuropsychological battery. Depression and other neuropsychiatric symptoms were also assessed. RESULTS: Neurologists determined that 38% of participants had probable dementia. An MDS-COGS cutpoint of 2 was highly specific (0.97) but not very sensitive (0.49) for dementia. Test-retest and interrater agreement for a negative screen were high (88% and 93%, respectively). CONCLUSION: The MDS-COGS is a simple, brief screen that RC/AL staff can complete. It will identify with high specificity a subset of residents with undetected dementia, allowing rapid identification of those likely to need dementia care. Caution needs to be exercised in light of its low sensitivity, because some with milder dementia will not be detected. Further work is needed to determine whether staff can and will use the MDS-COGS as a trigger for morethorough assessment and to guide care and improve outcomes. J Am Geriatr Soc 55: 1349-1355, 2007.
Objective: Patients and palliative care experts endorse the importance of spiritual care for seri... more Objective: Patients and palliative care experts endorse the importance of spiritual care for seriously ill patients and their families. However, little is known about spiritual care during serious illness, and whether it satisfies patients' and families' needs. The objective of this study was to describe spiritual care received by patients and families during serious illness, and test whether the provider and the type of care is associated with satisfaction with care.
International Journal of Geriatric Psychiatry, 2010
Objective: The purpose of this study was to examine risk of nursing home (NH) placement among old... more Objective: The purpose of this study was to examine risk of nursing home (NH) placement among older adults receiving publicly funded home and community-based services (HCBS) or assisted living (AL) and to explore whether these settings of care modify the relationship between dementia and risk of NH placement. Methods: The sample consisted of dually eligible Medicare and Medicaid beneficiaries age 65 and older who received HCBS (n ¼ 1630) or resided in AL (n ¼ 836) in Florida between July 1999 and June 2000. Cox proportional hazards regression was used to estimate risk of NH placement over a 5-year study period and to test the interaction of setting of care by dementia status. Results: In all, 15% of HCBS participants were placed in a NH compared to 26% of AL participants. As indicated by a significant interaction term in the regression model, setting of care modified the relationship between dementia and NH placement (HR ¼ 0.45, CI ¼ 0.31-0.66). In post hoc analyses stratified by setting of care, dementia was associated with a 50% increased risk of NH placement from HCBS (HR ¼ 1.50, CI ¼ 1.12-2.02) but was not associated with placement from AL (HR ¼ 0.86, CI ¼ 0.63-1.16). Conclusion: The findings suggest that differences in care provided in HCBS and AL may influence subsequent NH placement for older adults with dementia.
High turnover of nursing assistants (NAs) has implications for the quality of nursing home care. ... more High turnover of nursing assistants (NAs) has implications for the quality of nursing home care. Greater understanding of correlates of NA turnover is needed to provide insight into possible retention strategies. This study examined nursing home organizational characteristics and specific job characteristics of staff in relation to turnover of NAs. Cross-sectional data on 944 nationally representative nursing homes were derived from the 2004 National Nursing Home Survey. Using a 3-month turnover rate, 25% of the facilities with the lowest turnover rates were classified as low turnover, 25% of the facilities with the highest turnover were classified as high turnover, and the remaining 50% of the facilities were classified as moderate turnover. Multinomial logistic regression was used to examine organizational and job characteristics associated with low and high turnover compared with moderate turnover. One organizational characteristic, staffing levels at or greater than 4.0 hours per patient day, was associated with greater odds of low NA turnover and reduced odds of high NA turnover. Job characteristics including higher wages and union membership were associated with greater odds of low NA turnover, whereas wages, fully paid health insurance, employee assistance benefits, and involvement in resident care planning were associated with reduced odds of high NA turnover. The results of this study suggest that job characteristics of NA staff may be particularly important for turnover. Specifically, the provision of competitive wages and benefits (particularly health insurance) and involvement of NAs in resident care planning could potentially reduce NA turnover, as could maintaining high levels of nurse staffing.
Purpose: This study explored aspects of stigmatization for older adults who live in residential c... more Purpose: This study explored aspects of stigmatization for older adults who live in residential care or assisted living (RC-AL) communities and what these settings have done to address stigma. Design and Methods: We used ethnography and other qualitative data-gathering and analytic techniques to gather data from 309 participants (residents, family and staff) from six RC-AL settings in Maryland. We entered the transcript data into Atlas.ti 5.0. We analyzed the data by using grounded theory techniques for emergent themes.
Purpose: The purpose of this study was to compare the sociodemographics, self-rated health, and i... more Purpose: The purpose of this study was to compare the sociodemographics, self-rated health, and involvement levels of family caregivers of residents with dementia in residential care/assisted living (RC/ AL) versus nursing home settings. Design and Methods: We conducted telephone interviews with the family caregivers most involved with 353 residents of 34 residential care and 10 nursing home facilities. We measured involvement by caregiver self-report of monthly out-of-pocket spending, involvement and burden ratings, and the frequency of engaging in eight specific care activities. Open-ended questions elicited areas in which caregivers preferred different involvement and ways the facility could facilitate involvement. Results: Nursing home caregivers rated their health poorer than RC/AL caregivers, but there were no sociodemographic differences between the two. RC/AL caregivers rated both their perception of involvement and burden higher and engaged more frequently in monitoring the resident's health, wellbeing, and finances than did nursing home caregivers, although the reported time spent per week on care did not differ. Implications: RC/AL and nursing home caregivers to residents with dementia may tailor their care to fit the needs of the resident and setting. Results are discussed in relation to the Congruence Model of Person-Environment Fit.
This special issue of The Gerontologist is sponsored through a generous grant from the Alzheimer'... more This special issue of The Gerontologist is sponsored through a generous grant from the Alzheimer's Association. Recognition and thanks are sent to the staff, residents, and families participating in the Collaborative Studies of Long-Term Care (CS-LTC) and to all of those who devote their efforts to the quality of life and quality of care in assisted living and nursing homes.
This article examines associations between nursing home structural and process characteristics an... more This article examines associations between nursing home structural and process characteristics and presence of advance directives and trends over 5 years of advance directives in Florida nursing homes. Our results underscore the importance of nursing homes' processes in facilitating discussions of nursing home residents' end-of-life care preferences.
Fieldnotes, the subject of some recent scholarly interest in sociology (Emerson, Fretz, and Shaw ... more Fieldnotes, the subject of some recent scholarly interest in sociology (Emerson, Fretz, and Shaw 1995) and anthropology (Sanjek 1990a) are the means by which fieldworkers come to grips with the other, the data of their ethnographies. Although there is some sentiment for ...
To examine the attitudes of residential care/assisted living (RC/AL) and nursing home (NH) admini... more To examine the attitudes of residential care/assisted living (RC/AL) and nursing home (NH) administrators toward hospice and to assess facility and administrator characteristics related to those attitudes.
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Papers by Debra Dobbs