NAU publications by CHER
Faculty & staff publications
NAU faculty and staff have the opportunity to publish their findings and knowledge as authors. CHER has many researchers that have been cited multiple times in major publications for their great work. The Center for Health Equity Research has accumulated all faculty publications into one, easy to navigate database.
Please type in a key word or author LAST name to search
Bosch, Pamela R; Barr, Dawn; Roy, Indrakshi; Fabricant, Maximillian; Mann, Audrey; Mangone, Elizabeth; Karmarkar, Amol; Kumar, Amit Association of Caregiver Availability and Training With Patient Community Discharge After Stroke Journal Article ScienceDirect, 5 (1), 2023. @article{Bosch2023, title = {Association of Caregiver Availability and Training With Patient Community Discharge After Stroke}, author = {Pamela R. Bosch and Dawn Barr and Indrakshi Roy and Maximillian Fabricant and Audrey Mann and Elizabeth Mangone and Amol Karmarkar and Amit Kumar}, url = {https://doi.org/10.1016/j.arrct.2022.100251}, doi = {10.1016/j.arrct.2022.100251}, year = {2023}, date = {2023-03-15}, journal = {ScienceDirect}, volume = {5}, number = {1}, abstract = {To examine the association between committed caregivers and caregiver training with community discharge from inpatient rehabilitation after a stroke. 1397 adult patients (mean ± SD age: 69.4 [13.5]; 724 men) transferred from an acute care setting to inpatient rehabilitation after an ischemic or hemorrhagic stroke (N=1397). 82.4% of patients had caregivers, 63.4% of patient caregivers received training at the IRF, and 79.5% had community discharge. After adjusting for age, stroke severity, functional status, and other social risk factors, having a committed caregiver and caregiver training were significantly associated with community discharge (odds ratio [OR]=7.80, 95% confidence interval [CI]: 5.03-12.10 and OR=4.89, 95% CI: 3.16-7.57, respectively). Caregivers increase a patient's likelihood of discharge from IRF; the added benefit of caregiver training needs to be further assessed, with essential elements prioritized prior to patients’ IRF discharge.}, keywords = {}, pubstate = {published}, tppubtype = {article} } To examine the association between committed caregivers and caregiver training with community discharge from inpatient rehabilitation after a stroke. 1397 adult patients (mean ± SD age: 69.4 [13.5]; 724 men) transferred from an acute care setting to inpatient rehabilitation after an ischemic or hemorrhagic stroke (N=1397). 82.4% of patients had caregivers, 63.4% of patient caregivers received training at the IRF, and 79.5% had community discharge. After adjusting for age, stroke severity, functional status, and other social risk factors, having a committed caregiver and caregiver training were significantly associated with community discharge (odds ratio [OR]=7.80, 95% confidence interval [CI]: 5.03-12.10 and OR=4.89, 95% CI: 3.16-7.57, respectively). Caregivers increase a patient's likelihood of discharge from IRF; the added benefit of caregiver training needs to be further assessed, with essential elements prioritized prior to patients’ IRF discharge. |
McCarthy, Michael J; Garcia, Evie Y; Remiker, Mark; Hustead, Morgan Lee-Regalado; Bacon, Rachel; Williamson, Heather J; Dunn, Dorothy J; Baldwin, Julie A Aging Mental Health, 1 , pp. 94-100, 2022. @article{McCarthy2022b, title = {Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level}, author = {Michael J. McCarthy and Y. Evie Garcia and Mark Remiker and Morgan Lee-Regalado Hustead and Rachel Bacon and Heather J. Williamson and Dorothy J. Dunn and Julie A. Baldwin}, url = {https://www.tandfonline.com/doi/full/10.1080/13607863.2022.2026880}, doi = {10.1080/13607863.2022.2026880}, year = {2022}, date = {2022-01-31}, journal = {Aging Mental Health}, volume = {1}, pages = {94-100}, abstract = {Approximately 6.2 million Americans aged 65 or older have Alzheimer’s disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health. A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers. 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality. Rural caregivers, regardless of ethnicity/race, may benefit from extra support in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Approximately 6.2 million Americans aged 65 or older have Alzheimer’s disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health. A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers. 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality. Rural caregivers, regardless of ethnicity/race, may benefit from extra support in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health. |
Boucher, Nathan A; Bull, Janet H; Cross, Sarah H; Kirby, Christine; Davis, Kelly J; Jr., Donald Taylor H Patient, caregiver and taxpayer knowledge of palliative care and views on a model of community-based palliative care Journal Article Journal of Pain and Symptom Management, 2018. @article{Boucher2018, title = {Patient, caregiver and taxpayer knowledge of palliative care and views on a model of community-based palliative care}, author = {Nathan A Boucher and Janet H Bull and Sarah H Cross and Christine Kirby and Kelly J Davis and Donald Taylor H Jr.}, url = {https://www.sciencedirect.com/science/article/pii/S0885392418304378}, year = {2018}, date = {2018-08-25}, journal = {Journal of Pain and Symptom Management}, abstract = {Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC. |
Boucher, Nathan A; Bull, Janet H; Cross, Sarah H; Kirby, Christine; Davis, Kelly J; Taylor, Jr. Donald H Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care Journal Article Journal of pain and Symptom Management, 56 (6), pp. 951-956, 2018. @article{Boucher2018b, title = {Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care}, author = {Nathan A Boucher and Janet H Bull and Sarah H Cross and Christine Kirby and Kelly J Davis and Jr. Donald H. Taylor}, url = {https://www.sciencedirect.com/science/article/pii/S0885392418304378?dgcid=coauthor}, doi = {https://doi.org/10.1016/j.jpainsymman.2018.08.007}, year = {2018}, date = {2018-08-25}, journal = {Journal of pain and Symptom Management}, volume = {56}, number = {6}, pages = {951-956}, abstract = {Abstract Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Abstract Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC. |
Cordova-Marks, Felina M; Harris, Robin; Teufel-Shone, Nicolette; Norton, Beatrice; Mastergeorge, Ann M; Gerald, Lynn Characteristics of American Indian female caregivers on a Southwest American Indian reservation Journal Article Journal of Community Health, 2018. @article{Cordova-Marks2018, title = {Characteristics of American Indian female caregivers on a Southwest American Indian reservation}, author = {Felina M Cordova-Marks and Robin Harris and Nicolette Teufel-Shone and Beatrice Norton and Ann M Mastergeorge and Lynn Gerald}, url = {https://link.springer.com/article/10.1007%2Fs10900-018-0552-7}, year = {2018}, date = {2018-07-28}, journal = {Journal of Community Health}, abstract = {American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June–October 2017, mean age of 59 years (± 12.6) with mean 5.5 year (± 4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June–October 2017, mean age of 59 years (± 12.6) with mean 5.5 year (± 4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress. |
2023 |
Bosch, Pamela R; Barr, Dawn; Roy, Indrakshi; Fabricant, Maximillian; Mann, Audrey; Mangone, Elizabeth; Karmarkar, Amol; Kumar, Amit Association of Caregiver Availability and Training With Patient Community Discharge After Stroke Journal Article ScienceDirect, 5 (1), 2023. @article{Bosch2023, title = {Association of Caregiver Availability and Training With Patient Community Discharge After Stroke}, author = {Pamela R. Bosch and Dawn Barr and Indrakshi Roy and Maximillian Fabricant and Audrey Mann and Elizabeth Mangone and Amol Karmarkar and Amit Kumar}, url = {https://doi.org/10.1016/j.arrct.2022.100251}, doi = {10.1016/j.arrct.2022.100251}, year = {2023}, date = {2023-03-15}, journal = {ScienceDirect}, volume = {5}, number = {1}, abstract = {To examine the association between committed caregivers and caregiver training with community discharge from inpatient rehabilitation after a stroke. 1397 adult patients (mean ± SD age: 69.4 [13.5]; 724 men) transferred from an acute care setting to inpatient rehabilitation after an ischemic or hemorrhagic stroke (N=1397). 82.4% of patients had caregivers, 63.4% of patient caregivers received training at the IRF, and 79.5% had community discharge. After adjusting for age, stroke severity, functional status, and other social risk factors, having a committed caregiver and caregiver training were significantly associated with community discharge (odds ratio [OR]=7.80, 95% confidence interval [CI]: 5.03-12.10 and OR=4.89, 95% CI: 3.16-7.57, respectively). Caregivers increase a patient's likelihood of discharge from IRF; the added benefit of caregiver training needs to be further assessed, with essential elements prioritized prior to patients’ IRF discharge.}, keywords = {}, pubstate = {published}, tppubtype = {article} } To examine the association between committed caregivers and caregiver training with community discharge from inpatient rehabilitation after a stroke. 1397 adult patients (mean ± SD age: 69.4 [13.5]; 724 men) transferred from an acute care setting to inpatient rehabilitation after an ischemic or hemorrhagic stroke (N=1397). 82.4% of patients had caregivers, 63.4% of patient caregivers received training at the IRF, and 79.5% had community discharge. After adjusting for age, stroke severity, functional status, and other social risk factors, having a committed caregiver and caregiver training were significantly associated with community discharge (odds ratio [OR]=7.80, 95% confidence interval [CI]: 5.03-12.10 and OR=4.89, 95% CI: 3.16-7.57, respectively). Caregivers increase a patient's likelihood of discharge from IRF; the added benefit of caregiver training needs to be further assessed, with essential elements prioritized prior to patients’ IRF discharge. |
2022 |
McCarthy, Michael J; Garcia, Evie Y; Remiker, Mark; Hustead, Morgan Lee-Regalado; Bacon, Rachel; Williamson, Heather J; Dunn, Dorothy J; Baldwin, Julie A Aging Mental Health, 1 , pp. 94-100, 2022. @article{McCarthy2022b, title = {Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level}, author = {Michael J. McCarthy and Y. Evie Garcia and Mark Remiker and Morgan Lee-Regalado Hustead and Rachel Bacon and Heather J. Williamson and Dorothy J. Dunn and Julie A. Baldwin}, url = {https://www.tandfonline.com/doi/full/10.1080/13607863.2022.2026880}, doi = {10.1080/13607863.2022.2026880}, year = {2022}, date = {2022-01-31}, journal = {Aging Mental Health}, volume = {1}, pages = {94-100}, abstract = {Approximately 6.2 million Americans aged 65 or older have Alzheimer’s disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health. A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers. 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality. Rural caregivers, regardless of ethnicity/race, may benefit from extra support in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Approximately 6.2 million Americans aged 65 or older have Alzheimer’s disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health. A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers. 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality. Rural caregivers, regardless of ethnicity/race, may benefit from extra support in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health. |
2018 |
Boucher, Nathan A; Bull, Janet H; Cross, Sarah H; Kirby, Christine; Davis, Kelly J; Jr., Donald Taylor H Patient, caregiver and taxpayer knowledge of palliative care and views on a model of community-based palliative care Journal Article Journal of Pain and Symptom Management, 2018. @article{Boucher2018, title = {Patient, caregiver and taxpayer knowledge of palliative care and views on a model of community-based palliative care}, author = {Nathan A Boucher and Janet H Bull and Sarah H Cross and Christine Kirby and Kelly J Davis and Donald Taylor H Jr.}, url = {https://www.sciencedirect.com/science/article/pii/S0885392418304378}, year = {2018}, date = {2018-08-25}, journal = {Journal of Pain and Symptom Management}, abstract = {Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC. |
Boucher, Nathan A; Bull, Janet H; Cross, Sarah H; Kirby, Christine; Davis, Kelly J; Taylor, Jr. Donald H Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care Journal Article Journal of pain and Symptom Management, 56 (6), pp. 951-956, 2018. @article{Boucher2018b, title = {Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care}, author = {Nathan A Boucher and Janet H Bull and Sarah H Cross and Christine Kirby and Kelly J Davis and Jr. Donald H. Taylor}, url = {https://www.sciencedirect.com/science/article/pii/S0885392418304378?dgcid=coauthor}, doi = {https://doi.org/10.1016/j.jpainsymman.2018.08.007}, year = {2018}, date = {2018-08-25}, journal = {Journal of pain and Symptom Management}, volume = {56}, number = {6}, pages = {951-956}, abstract = {Abstract Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.}, keywords = {}, pubstate = {published}, tppubtype = {article} } Abstract Context Palliative care (PC) model delivered by two large hospices and PC providers. Objectives To understand study participants' knowledge of PC and acceptability of a new community-based PC model. Methods Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. Results Across 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. Conclusion Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC. |
Cordova-Marks, Felina M; Harris, Robin; Teufel-Shone, Nicolette; Norton, Beatrice; Mastergeorge, Ann M; Gerald, Lynn Characteristics of American Indian female caregivers on a Southwest American Indian reservation Journal Article Journal of Community Health, 2018. @article{Cordova-Marks2018, title = {Characteristics of American Indian female caregivers on a Southwest American Indian reservation}, author = {Felina M Cordova-Marks and Robin Harris and Nicolette Teufel-Shone and Beatrice Norton and Ann M Mastergeorge and Lynn Gerald}, url = {https://link.springer.com/article/10.1007%2Fs10900-018-0552-7}, year = {2018}, date = {2018-07-28}, journal = {Journal of Community Health}, abstract = {American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June–October 2017, mean age of 59 years (± 12.6) with mean 5.5 year (± 4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress.}, keywords = {}, pubstate = {published}, tppubtype = {article} } American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June–October 2017, mean age of 59 years (± 12.6) with mean 5.5 year (± 4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress. |