Pub Date : 2022-04-01Epub Date: 2021-10-12DOI: 10.1080/15524256.2021.1984370
Eunju Lee
At the intersection of gender and race are Black women, who experience higher levels of racism, sexism, and discrimination than Black men and White women, with greater impact on their health. Theirs is a legacy of trauma as enslaved bodies whose procreative function served as instruments of economic profit, vehicles of sexual pleasure, and matter for medical experimentation. Their mothers were Henrietta Lacks, whose cancer cells were preserved and propagated without her knowledge and Anarcha, on whom J Marion Sims, the “father of modern gynecology” performed 30 fistula surgeries without anesthesia. I understood this as the history Ms. C carried with her to her hospital bed as she recovered from surgery for her colorectal cancer and relayed a series of experiences where her Black body was fodder for careless disregard and easy slights.
{"title":"Reflections from the Field Seeking Wholeness: The Black Women Patient Experience.","authors":"Eunju Lee","doi":"10.1080/15524256.2021.1984370","DOIUrl":"https://doi.org/10.1080/15524256.2021.1984370","url":null,"abstract":"At the intersection of gender and race are Black women, who experience higher levels of racism, sexism, and discrimination than Black men and White women, with greater impact on their health. Theirs is a legacy of trauma as enslaved bodies whose procreative function served as instruments of economic profit, vehicles of sexual pleasure, and matter for medical experimentation. Their mothers were Henrietta Lacks, whose cancer cells were preserved and propagated without her knowledge and Anarcha, on whom J Marion Sims, the “father of modern gynecology” performed 30 fistula surgeries without anesthesia. I understood this as the history Ms. C carried with her to her hospital bed as she recovered from surgery for her colorectal cancer and relayed a series of experiences where her Black body was fodder for careless disregard and easy slights.","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"119-121"},"PeriodicalIF":1.6,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39510827","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-01DOI: 10.1080/15524256.2022.2046236
Debra Parker Oliver, Karla T Washington, Jacquelyn Benson, Patrick White, Dulce Cruz Oliver, Jamie B Smith, Joshua Mazur, Abeba Lakew, Alexandra Lewis, George Demiris
Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.
{"title":"Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.","authors":"Debra Parker Oliver, Karla T Washington, Jacquelyn Benson, Patrick White, Dulce Cruz Oliver, Jamie B Smith, Joshua Mazur, Abeba Lakew, Alexandra Lewis, George Demiris","doi":"10.1080/15524256.2022.2046236","DOIUrl":"https://doi.org/10.1080/15524256.2022.2046236","url":null,"abstract":"<p><p>Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.</p>","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"18 2","pages":"146-159"},"PeriodicalIF":1.6,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9262848/pdf/nihms-1802001.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9233012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-01Epub Date: 2021-10-03DOI: 10.1080/15524256.2021.1977763
Elizabeth Walmsley
{"title":"Palliative Care and Racism in Medicine.","authors":"Elizabeth Walmsley","doi":"10.1080/15524256.2021.1977763","DOIUrl":"https://doi.org/10.1080/15524256.2021.1977763","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"111-115"},"PeriodicalIF":1.6,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39483359","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-01Epub Date: 2021-12-19DOI: 10.1080/15524256.2021.2015738
Lisa Petgrave-Nelson
{"title":"\"Will These White Doctors Do Right By Me?\"","authors":"Lisa Petgrave-Nelson","doi":"10.1080/15524256.2021.2015738","DOIUrl":"https://doi.org/10.1080/15524256.2021.2015738","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"122-124"},"PeriodicalIF":1.6,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39614906","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-01DOI: 10.1080/15524256.2022.2092692
Ellen Csikai
The journal had a call for manuscripts for a special issue on “Racism and its Challenges in Palliative Social Work” in 2021. Dr. Karen Bullock served as the Guest Editor for this call (assisted by Stacy Orloff, Reflections section Editor). Thanks to Dr. Bullock for agreeing to work on this issue and for her oversight of the reviews of the manuscripts we received for this special call. In this issue, we share several “Reflections” received for this topic. Please don’t miss the Reflections as these social workers’ share their thoughts and experiences. Unfortunately, we did not have other submissions that were able to be accepted among the very low number submitted for practice concepts or research categories. We were expecting to produce a meaningful full issue addressing this important area affecting everyday policy, practice and research. We hope that this does not mean that the work addressing challenges that racism poses in providing palliative care is not being done. On behalf of the journal’s editorial board, I invite those of you doing this work to please submit your projects, programs, and studies to the journal at any time for potential publication. We will look forward to seeing your submissions. Our goal is that this journal continues to be a vehicle to share good work as well as highlight what needs to be done better. Moving on to the research articles in this issues, the first addresses the important topic of preparing for death of an older adult family member by the family caregivers. Hovland and Fuller specifically focus on a sample of African American family caregivers because African Americans are at higher risk of dementia-related health problems, although diagnosed at a much lower rate than Caucasians. They are also less likely to enroll in hospice services, therefore the authors believed there was something we could learn from those that do that could possibly help others to enroll. In their qualitative study including five hospice family caregivers, all reported that they felt “prepared” for their family members’ deaths and further believed that being prepared was important. The role that hospice played in helping them to achieve this is discussed through their narratives. In another entry regarding hospice family caregivers, Oliver and colleagues describe a Facebook online support group for hospice family caregivers caring for people with advanced cancer. They describe this intervention, implementation and results. The online support groups were designed to provide education and support. The participants in the group reported lower levels of depression after participation in the group. Hospice programs may wish to develop similar online protocols/groups adapted for the caregivers they serve. Next, Plys et al. present a study focusing on the psychosocial effect of death on the surviving residents with Assisted Living Facilities. They took a qualitative look and analyzed several sources of data within 21 AL facilities, including
{"title":"Editor Introduction.","authors":"Ellen Csikai","doi":"10.1080/15524256.2022.2092692","DOIUrl":"https://doi.org/10.1080/15524256.2022.2092692","url":null,"abstract":"The journal had a call for manuscripts for a special issue on “Racism and its Challenges in Palliative Social Work” in 2021. Dr. Karen Bullock served as the Guest Editor for this call (assisted by Stacy Orloff, Reflections section Editor). Thanks to Dr. Bullock for agreeing to work on this issue and for her oversight of the reviews of the manuscripts we received for this special call. In this issue, we share several “Reflections” received for this topic. Please don’t miss the Reflections as these social workers’ share their thoughts and experiences. Unfortunately, we did not have other submissions that were able to be accepted among the very low number submitted for practice concepts or research categories. We were expecting to produce a meaningful full issue addressing this important area affecting everyday policy, practice and research. We hope that this does not mean that the work addressing challenges that racism poses in providing palliative care is not being done. On behalf of the journal’s editorial board, I invite those of you doing this work to please submit your projects, programs, and studies to the journal at any time for potential publication. We will look forward to seeing your submissions. Our goal is that this journal continues to be a vehicle to share good work as well as highlight what needs to be done better. Moving on to the research articles in this issues, the first addresses the important topic of preparing for death of an older adult family member by the family caregivers. Hovland and Fuller specifically focus on a sample of African American family caregivers because African Americans are at higher risk of dementia-related health problems, although diagnosed at a much lower rate than Caucasians. They are also less likely to enroll in hospice services, therefore the authors believed there was something we could learn from those that do that could possibly help others to enroll. In their qualitative study including five hospice family caregivers, all reported that they felt “prepared” for their family members’ deaths and further believed that being prepared was important. The role that hospice played in helping them to achieve this is discussed through their narratives. In another entry regarding hospice family caregivers, Oliver and colleagues describe a Facebook online support group for hospice family caregivers caring for people with advanced cancer. They describe this intervention, implementation and results. The online support groups were designed to provide education and support. The participants in the group reported lower levels of depression after participation in the group. Hospice programs may wish to develop similar online protocols/groups adapted for the caregivers they serve. Next, Plys et al. present a study focusing on the psychosocial effect of death on the surviving residents with Assisted Living Facilities. They took a qualitative look and analyzed several sources of data within 21 AL facilities, including","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":" ","pages":"109-110"},"PeriodicalIF":1.6,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40573743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-26DOI: 10.1080/15524256.2022.2053029
M. Mahendiran
{"title":"P.s. pps","authors":"M. Mahendiran","doi":"10.1080/15524256.2022.2053029","DOIUrl":"https://doi.org/10.1080/15524256.2022.2053029","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"62 1","pages":"202 - 202"},"PeriodicalIF":1.6,"publicationDate":"2022-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86435370","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-12DOI: 10.1080/15524256.2022.2050340
Aysha Jawed
{"title":"An Honorable Ending: Mobilizing Bereavement Resources Amidst a Christmas Tragedy","authors":"Aysha Jawed","doi":"10.1080/15524256.2022.2050340","DOIUrl":"https://doi.org/10.1080/15524256.2022.2050340","url":null,"abstract":"","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"21 1","pages":"199 - 201"},"PeriodicalIF":1.6,"publicationDate":"2022-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73514237","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-07DOI: 10.1080/15524256.2022.2046237
Kimberly Hong
In the field of social work, one of the first lessons we learn is to place the client first. Awareness of our own countertransference is key in identifying and working with our clients. We make sure that we are aware of our emo-tional responses and do not allow these feelings to influence how we may treat our clients. Both transference and countertransference are defined by automatic reactions clinicians may feel toward their patients based on potentially similar experiences, and patients may also feel toward their healthcare team, again based on prior experiences. At certain times, transference can be a positive thing as it allows natural empathy to ensue within clinicians as they work with patients, providing great and empathetic care. On the other hand, it can also be negative, if clinicians are unable to con-trol these reactions and respond in a way that hurts their work or even relationships with respective patients.
{"title":"Advocacy Needed for Young Adult Patients of Color from Clinicians' Racial Lens","authors":"Kimberly Hong","doi":"10.1080/15524256.2022.2046237","DOIUrl":"https://doi.org/10.1080/15524256.2022.2046237","url":null,"abstract":"In the field of social work, one of the first lessons we learn is to place the client first. Awareness of our own countertransference is key in identifying and working with our clients. We make sure that we are aware of our emo-tional responses and do not allow these feelings to influence how we may treat our clients. Both transference and countertransference are defined by automatic reactions clinicians may feel toward their patients based on potentially similar experiences, and patients may also feel toward their healthcare team, again based on prior experiences. At certain times, transference can be a positive thing as it allows natural empathy to ensue within clinicians as they work with patients, providing great and empathetic care. On the other hand, it can also be negative, if clinicians are unable to con-trol these reactions and respond in a way that hurts their work or even relationships with respective patients.","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"38 1","pages":"125 - 128"},"PeriodicalIF":1.6,"publicationDate":"2022-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80100114","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-02-28DOI: 10.1080/15524256.2022.2042458
Cynthia A. Hovland, Kimberly A. Fuller
Abstract The focus of this pilot study was to ascertain how bereaved African American caregivers prepared for the death of an older family member who died from a dementia-related diagnosis and the role of hospice care; an area with little research to date. Because African American older adults in the United States are at greater risk than Caucasian older adults for dementia-related health problems though less likely to be diagnosed, treated, or to enroll in hospice services, this exploratory study asked questions of the family caregivers’ experiences in preparing for the death. Purposive criterion sampling was used to identify six African American bereaved caregivers whose family member lived in a nursing home (five who were enrolled in hospice services) who were extensively interviewed, with the use of conventional content analysis of the transcripts to identify the findings. Because of the limited sample size, themes identified were considered preliminary and may help guide ongoing and further research. Five primary themes revealed ways caregivers prepared: accepting reality; “I just kind of knew;” person with dementia “was ready;” “spending time;” and, getting your “business in order.” All caregivers believed it was important to be prepared for the death, with the five who received hospice services reporting that they were prepared. Further research is needed to explore these preliminary findings of African American caregivers of family members with dementia at end-of-life to further inform social work and hospice team care.
{"title":"African American Family Caregivers Share How they Prepared for the Death of an Older Adult with Dementia: A Pilot Study of Hospice Care in A Nursing Home","authors":"Cynthia A. Hovland, Kimberly A. Fuller","doi":"10.1080/15524256.2022.2042458","DOIUrl":"https://doi.org/10.1080/15524256.2022.2042458","url":null,"abstract":"Abstract The focus of this pilot study was to ascertain how bereaved African American caregivers prepared for the death of an older family member who died from a dementia-related diagnosis and the role of hospice care; an area with little research to date. Because African American older adults in the United States are at greater risk than Caucasian older adults for dementia-related health problems though less likely to be diagnosed, treated, or to enroll in hospice services, this exploratory study asked questions of the family caregivers’ experiences in preparing for the death. Purposive criterion sampling was used to identify six African American bereaved caregivers whose family member lived in a nursing home (five who were enrolled in hospice services) who were extensively interviewed, with the use of conventional content analysis of the transcripts to identify the findings. Because of the limited sample size, themes identified were considered preliminary and may help guide ongoing and further research. Five primary themes revealed ways caregivers prepared: accepting reality; “I just kind of knew;” person with dementia “was ready;” “spending time;” and, getting your “business in order.” All caregivers believed it was important to be prepared for the death, with the five who received hospice services reporting that they were prepared. Further research is needed to explore these preliminary findings of African American caregivers of family members with dementia at end-of-life to further inform social work and hospice team care.","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"13 1","pages":"129 - 145"},"PeriodicalIF":1.6,"publicationDate":"2022-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83197935","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-02DOI: 10.1080/15524256.2022.2042459
R. Spatuzzi, A. Vespa, P. Fabbietti, M. Ricciuti, G. Rosati, Lorella Guariniello, Maria Antonietta Flavia Verrastro, L. Attademo, M. Giulietti
Abstract A new reality is being observed around the world as the population ages: family caregivers, who are themselves older adults helping their ill older relatives. The aim of this study is to assess the burden of the older family caregiver assisting older patients in his or her end-of-life who are suffering from dementia or cancer. In this context, the elderly person is involved in the dual role of patient and caregiver. In this comparative study, a total of 87 older family caregivers (age ≥ 65 years) completed the Caregiver Burden Inventory (CBI) measurement. The sample was divided into 2 subgroups based on the individuals’ advanced disease: Alzheimer’s disease (AD) or cancer. Compared to cancer caregivers, the AD subgroup reported significantly higher scores in the CBI-emotional subscale (P = 0.006), confirmed by the evaluation of the generalized linear model (multivariate). There were no significant differences in the other CBI subscales and overall scores. According to the findings of this study, elderly who help elderly with AD are at a higher risk of experiencing an emotional burden than cancer caregivers. This data could be considered in designing interventions to reduce the caregiver burden of older family caregivers as they provide informal end-of-life care.
{"title":"Elderly Helping Other Elderly: A Comparative Study of Family Caregiver Burden Between Patients With Dementia or Cancer at the End of Life","authors":"R. Spatuzzi, A. Vespa, P. Fabbietti, M. Ricciuti, G. Rosati, Lorella Guariniello, Maria Antonietta Flavia Verrastro, L. Attademo, M. Giulietti","doi":"10.1080/15524256.2022.2042459","DOIUrl":"https://doi.org/10.1080/15524256.2022.2042459","url":null,"abstract":"Abstract A new reality is being observed around the world as the population ages: family caregivers, who are themselves older adults helping their ill older relatives. The aim of this study is to assess the burden of the older family caregiver assisting older patients in his or her end-of-life who are suffering from dementia or cancer. In this context, the elderly person is involved in the dual role of patient and caregiver. In this comparative study, a total of 87 older family caregivers (age ≥ 65 years) completed the Caregiver Burden Inventory (CBI) measurement. The sample was divided into 2 subgroups based on the individuals’ advanced disease: Alzheimer’s disease (AD) or cancer. Compared to cancer caregivers, the AD subgroup reported significantly higher scores in the CBI-emotional subscale (P = 0.006), confirmed by the evaluation of the generalized linear model (multivariate). There were no significant differences in the other CBI subscales and overall scores. According to the findings of this study, elderly who help elderly with AD are at a higher risk of experiencing an emotional burden than cancer caregivers. This data could be considered in designing interventions to reduce the caregiver burden of older family caregivers as they provide informal end-of-life care.","PeriodicalId":45992,"journal":{"name":"Journal of Social Work in End-of-Life & Palliative Care","volume":"28 1","pages":"96 - 108"},"PeriodicalIF":1.6,"publicationDate":"2022-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88737248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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