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Quigley, Denise D., and Sara G. McCleskey. "Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review." American Journal of Hospice and Palliative Medicine® 38, no. 1 (June 19, 2020): 84–93. http://dx.doi.org/10.1177/1049909120931468.
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Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences. Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews. Setting: Palliative and hospice care. Population: Full-text abstraction of 84 articles, identifying 16 articles. Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report). Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results. Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.
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Hupcey, Judith E., and Lisa A. Kitko. "ICD Deactivation at the End of Life: Patient and Caregiver Experiences." Journal of Cardiac Failure 19, no. 8 (August 2013): S75—S76. http://dx.doi.org/10.1016/j.cardfail.2013.06.244.
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Boogaard, Jannie A., Jenny T. van der Steen, Alice H. de Boer, and Marjolein I. Broese van Groenou. "How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers’ Outcomes?" American Journal of Hospice and Palliative Medicine® 36, no. 11 (April 14, 2019): 1008–15. http://dx.doi.org/10.1177/1049909119836932.
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Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers’ burden of care and positive experiences and explain differences in outcomes. Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
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Luth, Elizabeth, and Holly Prigerson. "Home Hospice Versus Other Places of Death and Caregiver Stresses." Innovation in Aging 4, Supplement_1 (December 1, 2020): 418. http://dx.doi.org/10.1093/geroni/igaa057.1349.
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Abstract As of 2017, more individuals in the U.S. die at home than in any other location. Hospice care was designed to provide support for people who are dying and their families. However, dying persons may have rapidly emerging needs that home hospice does not immediately meet, thereby, exposing family members to be “first responders.” Thus, home death may result in distress and burden for dying individuals’ family members, even when hospice is involved. This study uses multivariable regression analysis to explore the relationship between place of death and stressful end-of-life experiences in a sample of 185 patients with advanced cancer. We also analyze which end-of-life experiences are associated with death location. Compared to home hospice death, we found dying in a hospital was associated with fewer caregiver exposures to, and reports of fearfulness and helplessness in response to, stressful end-of-life events. Compared to home hospice death, hospital death was associated with decreased frequency of choking, falls, confusion/delirium, and feeling the patient has had enough. It was also associated with less fearfulness about choking and falls and less hopelessness about falls, the patient having enough, and thinking the patient was dead. Our results suggest home death with hospice care, often involves undesirable experiences that result in more caregiver fear and helplessness than dying in a hospital without hospice care. Research is needed to understand how to best support family members through stressful end-of-life experiences even when supported by home hospice services.
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An, Amy W., Susan Ladwig, Ronald M. Epstein, Holly G. Prigerson, and Paul R. Duberstein. "The impact of the caregiver-oncologist relationship on caregiver experiences of end-of-life care and bereavement outcomes." Supportive Care in Cancer 28, no. 9 (January 3, 2020): 4219–25. http://dx.doi.org/10.1007/s00520-019-05185-2.
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Armstrong, Melissa J., Henry L. Paulson, Susan M. Maixner, Julie A. Fields, Angela M. Lunde, Bradley F. Boeve, Carol Manning, James E. Galvin, Angela S. Taylor, and Zhigang Li. "Protocol for an observational cohort study identifying factors predicting accurately end of life in dementia with Lewy bodies and promoting quality end-of-life experiences: the PACE-DLB study." BMJ Open 11, no. 5 (May 2021): e047554. http://dx.doi.org/10.1136/bmjopen-2020-047554.
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IntroductionDementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known regarding what factors predict impending end of life or are associated with a quality end of life.Methods and analysisThis is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6 months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences.Ethics and disseminationThis study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (NCT04829656). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.
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Nakada, Haruka, and Mamoru Arakawa. "Caregiver Perspectives on End-of-Life Experiences of Patients With Left Ventricular Assist Devices." JAMA Internal Medicine 176, no. 8 (August 1, 2016): 1231. http://dx.doi.org/10.1001/jamainternmed.2016.3726.
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Luth, Elizabeth A., and Teja Pristavec. "CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY." Innovation in Aging 3, Supplement_1 (November 2019): S668. http://dx.doi.org/10.1093/geroni/igz038.2472.
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Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.
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LaValley, Susan A., and Elizabeth A. Gage-Bouchard. "Life Course Stage and Social Support Mobilization for End-of-Life Caregivers." Journal of Applied Gerontology 39, no. 8 (April 12, 2018): 820–27. http://dx.doi.org/10.1177/0733464818766666.
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Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers’ life course stage affects their barriers to mobilization of social support resources.
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Luth, Elizabeth A., and Teja Pristavec. "Do Caregiver Experiences Shape End-of-Life Care Perceptions? Burden, Benefits, and Care Quality Assessment." Journal of Pain and Symptom Management 59, no. 1 (January 2020): 77–85. http://dx.doi.org/10.1016/j.jpainsymman.2019.08.012.
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McIlvennan, Colleen K., Larry A. Allen, and Daniel D. Matlock. "Caregiver Perspectives on End-of-Life Experiences of Patients With Left Ventricular Assist Devices—Reply." JAMA Internal Medicine 176, no. 8 (August 1, 2016): 1231. http://dx.doi.org/10.1001/jamainternmed.2016.3735.
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Naoki, Yoko, Yoshinobu Matsuda, Isseki Maeda, Hideka Kamino, Yoko Kozaki, Akihiro Tokoro, Norimasa Maki, and Minoru Takada. "Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home." Palliative and Supportive Care 16, no. 3 (May 2, 2017): 260–68. http://dx.doi.org/10.1017/s1478951517000232.
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ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.
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Patel, Manali I., David Moore, and Tumaini R. Coker. "End-of-Life Cancer Care Redesign: Patient and Caregiver Experiences in a Lay Health Worker–Led Intervention." American Journal of Hospice and Palliative Medicine® 36, no. 12 (May 2, 2019): 1081–88. http://dx.doi.org/10.1177/1049909119847967.
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Importance: The Engagement of Patients with Advanced Cancer (EPAC), comprised of a lay health worker (LHW) who assists patients with advance care planning, is an effective intervention for improving patient experiences and reducing acute care use and total health-care costs. The objective of this study was to assess patients’ and caregivers’ experiences with the intervention. Methods: We invited all patients enrolled in EPAC and their caregivers to complete an 8-item survey at the end of the intervention and a random 35% sample to participate in a qualitative interview to assess their experiences. At 15-month follow-up, we invited all caregivers of patients who died during the study to participate in a qualitative interview. We analyzed survey responses using bivariate methods and recorded, transcribed, and analyzed interviews using qualitative content analysis. Results: Sixty-nine patients were alive at completion of the intervention and all 30 identified caregivers completed the survey. All viewed the intervention as a critical part of cancer care and recommended the intervention for other patients. In qualitative interviews, among 30 patients, all reported improved comfort in discussing their end-of-life care preferences. In qualitative interviews with 24 bereaved caregivers, all viewed the intervention as critical in ensuring that their loved ones’ wishes were adhered to at the end of life. Conclusions and Relevance: Incorporating an LHW into end-of-life cancer care is an approach supported and viewed as highly effective in improving care by patients and caregivers. The LHW-led EPAC intervention is one solution that can significantly impact patient and caregiver experiences.
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Waldrop, Deborah P., and Jacqueline M. McGinley. "“I want to go home”: How location at death influences caregiver well-being in bereavement." Palliative and Supportive Care 18, no. 6 (March 16, 2020): 691–98. http://dx.doi.org/10.1017/s1478951520000176.
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AbstractObjectivesGoal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement.MethodsMixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.ResultsPatient preference–actual location congruence occurred for 53%; caregiver preference–actual location congruence occurred for 74%; caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement.ConclusionsCongruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers’ sense of coherence and well-being in bereavement.
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Yeh, Jarmin, Rachel Main, Jeff Newman, and Lauren Hunt. "End-of-Life Care for Persons with Dementia: Caregiver Experiences and Recommendations for Improving Care (GP746)." Journal of Pain and Symptom Management 60, no. 1 (July 2020): 272–73. http://dx.doi.org/10.1016/j.jpainsymman.2020.04.173.
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Levoy, Kristin, Elise Tarbi, and Joseph De Santis. "End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model." Innovation in Aging 4, Supplement_1 (December 1, 2020): 417. http://dx.doi.org/10.1093/geroni/igaa057.1346.
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Abstract Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research.
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Rainsford, Suzanne, Roderick D. MacLeod, Nicholas J. Glasgow, Christine B. Phillips, Robert B. Wiles, and Donna M. Wilson. "Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review." Palliative Medicine 31, no. 10 (January 20, 2017): 895–912. http://dx.doi.org/10.1177/0269216316685234.
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Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and ‘country’. Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers’ experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.
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Armstrong, Melissa J., Slande Alliance, Pamela Corsentino, Susan M. Maixner, Henry L. Paulson, and Angela Taylor. "Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis." American Journal of Hospice and Palliative Medicine® 37, no. 9 (January 6, 2020): 728–37. http://dx.doi.org/10.1177/1049909119897241.
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Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.
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Sagha Zadeh, Rana, Paul Eshelman, Judith Setla, and Hessam Sadatsafavi. "Strategies to Improve Quality of Life at the End of Life: Interdisciplinary Team Perspectives." American Journal of Hospice and Palliative Medicine® 35, no. 3 (June 2, 2017): 411–16. http://dx.doi.org/10.1177/1049909117711997.
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This ethnographic study draws on the experiences of members of interdisciplinary care teams working with end-of-life care patients to identify strategies to improve quality of life through care practices. We surveyed 133 staff and volunteers (physicians, physician assistants, nurse practitioners, registered nurses, social workers, chaplains, administrators, and volunteers) who provide end-of-life care to patients in both home and institutional settings for 4 organizations in 2 counties in Upstate New York. Survey responses were analyzed using qualitative content analysis. The results identified numerous strategies to enhance and safeguard quality of life for end-of-life care patients and their family members. These strategies can be categorized into 6 domains: organization philosophy and mission; organizational policies; caregivers’ behaviors and practices; symptom management; facility design, operation and management; and patient, family member, and caregiver experience. The diverse list of identified strategies indicates that improving care to address the unique, complex, multilayered dimensions of quality of life at the end of life requires a multidisciplinary approach and consistency among care providers, including administration, clinical management, front-line caregivers, and support staff. When all of these strategies are used in harmony, care can truly be enhanced.
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Mori, Hiroko, Risa Fukuda, Akitoshi Hayashi, Kazunari Yamamoto, Chizuru Misago, and Takeo Nakayama. "Characteristics of caregiver perceptions of end-of-life caregiving experiences in cancer survivorship: in-depth interview study." Psycho-Oncology 21, no. 6 (March 23, 2011): 666–74. http://dx.doi.org/10.1002/pon.1964.
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Bolt, Sascha, Jenny van der Steen, Jos Schols, Sandra Zwakhalen, and Judith Meijers. "What do relatives value most in end-of-life care for people with dementia?" International Journal of Palliative Nursing 25, no. 9 (September 2, 2019): 432–42. http://dx.doi.org/10.12968/ijpn.2019.25.9.432.
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Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
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Durepos, Pamela, Jenny Ploeg, Tamara Sussman, Noori Akhtar-Danesh, and Sharon Kaasalainen. "“A Crazy Roller Coaster at the End”: A Qualitative Study of Death Preparedness With Caregivers of Persons With Dementia." SAGE Open Nursing 6 (January 2020): 237796082094911. http://dx.doi.org/10.1177/2377960820949111.
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Introduction Caregivers of persons with dementia experience challenges that can make preparing for end-of-life particularly difficult. Feeling prepared for death is associated with caregiver well-being in bereavement and is promoted by strategies supporting a palliative approach. Further conceptualization of caregiver preparedness for death of persons with dementia is needed to guide the practice of healthcare providers and to inform development of a preparedness questionnaire. Objectives We aimed to: 1) explore the end-of-life experiences of caregivers of persons with dementia to understand factors perceived as influencing preparedness; and 2) identify the core concepts (i.e., components), barriers and facilitators of preparedness for death. Methods This study used an interpretive descriptive design. Semi-structured interviews were conducted with sixteen bereaved caregivers of persons with dementia, recruited from long-term care homes in Ontario. Data was analyzed through reflexive thematic analysis. Findings Four themes were interpreted including: ‘A crazy rollercoaster at the end’ which described the journey of caregivers at end-of-life. The journey provided context for the development of core concepts (i.e., components) of preparedness represented by three themes: ‘A sense of control, ‘Doing right’ and ‘Coming to terms’. Conclusion The study findings serve to expand the conceptualization of preparedness and can guide improvements to practice in long-term care. Core concepts, facilitators and influential factors of preparedness will provide the conceptual basis and content to develop the Caring Ahead: Preparing for End-of-Life with Dementia questionnaire.
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HOLLAND, JASON M., and ROBERT A. NEIMEYER. "Reducing the risk of burnout in end-of-life care settings: The role of daily spiritual experiences and training." Palliative and Supportive Care 3, no. 3 (September 2005): 173–81. http://dx.doi.org/10.1017/s1478951505050297.
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Objective:Individuals in the helping professions are subject to unique stressors that may lead to burnout, and research has shown that those who work with dying or bereaved individuals might be particularly at-risk. This study explores how factors such as spirituality and level of training might buffer the stress of working with terminally ill clients and their families.Method:A total of 80 medical and mental health practitioners attending palliative care seminars were surveyed, with each completing validated measures of daily spiritual experiences and caregiver burnout, as well as assessments of demographic factors, their general education and training experiences specific to working in end-of-life care and bereavement settings.Results:Findings indicate that daily spiritual experiences might mitigate physical, cognitive, and emotional forms of burnout in the workplace. In addition, a negative correlation was found between the amount of end-of-life training received and burnout in the physical and cognitive domains. However, training was not related to professionals' level of emotional exhaustion.Significance of the research:Results reinforce a growing literature on the salutary effects of spirituality, and underscore its relevance as one possible form of constructive coping for professionals attending to the needs of the dying and bereaved. The study carries further implications for how the stresses of such work might be ameliorated by enhanced training efforts, as well as creative facilitation of diverse spiritual expressions (e.g., inclusive forms of ritual recognition of loss) in the workplace.
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Aoun, Samar M., Paul A. Cafarella, Anne Hogden, Geoff Thomas, Leanne Jiang, and Robert Edis. "Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective." Palliative Care and Social Practice 15 (January 2021): 263235242110095. http://dx.doi.org/10.1177/26323524211009537.
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Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.
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Kent, Erin E., Margaret Longacre, Lisa Weber-Raley, C. Grace Whiting, and Gail Hunt. "Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study." Journal of Clinical Oncology 34, no. 26_suppl (October 9, 2016): 4. http://dx.doi.org/10.1200/jco.2016.34.26_suppl.4.
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4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.
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Cottingham, Ann H., Kathleen Beck-Coon, Jennifer K. Bernat, Paul R. Helft, Karen Schmidt, Cleveland G. Shields, Alexia M. Torke, and Shelley A. Johns. "Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers." Palliative and Supportive Care 17, no. 03 (June 8, 2018): 276–85. http://dx.doi.org/10.1017/s1478951518000354.
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AbstractObjectiveAdvance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement.MethodThe Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.ResultFour salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.
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Sharma, S., and E. Kelly. "A100 END-STAGE CIRRHOSIS: EXPLORING THE PERSPECTIVES OF PATIENTS AND THEIR CAREGIVERS." Journal of the Canadian Association of Gastroenterology 4, Supplement_1 (March 1, 2021): 75–76. http://dx.doi.org/10.1093/jcag/gwab002.098.
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Abstract Background Despite therapy advances for patients with liver disease, readmission rates in patients with decompensated cirrhosis remain high. Studies have evaluated clinical risk factors influencing risk of readmission, but limited data exists on patient related outcome measures. Moreover, scant data exists on the impact of decompensated cirrhosis on caregivers. Aims We sought to evaluate and understand the patient experience of hospitalization and post-discharge, including factors perceived to be important by patients and their caregivers. Methods We identified patients who were admitted to the Ottawa Hospital for decompensated cirrhosis (October 2018-February 2019). Patients were consented to participate at the time of admission, or at the first clinic appointment with Hepatology post-discharge. Participants were administered a set of validated questionnaires exploring their experiences during their admission, and post-discharge. Questionnaires included the SF-36, Multidimensional Caregiver Strain Index, Social Support Scale, and a sociodemographic sheet. Patients were also asked to identify a caregiver, and if consented, a survey was also administered to their caregiver. Descriptive statistics were performed. Results A total of 20 patients and 10 caregivers were captured in the study. Of these, 72% (n=13) self-identified being disabled, retired, or unemployed and not currently looking for work, while 16% (n=3) were working full time. Income wise, 42% (n=8) of patients made between 20–50 thousand dollars, 42% (n=8) made more than fifty thousand, and n=2 had an income less than twenty thousand. With regards to education, 42% (n=8) had some college or technical school training, and 26% (n=5) were college graduates. All patients lived in stable housing, with the majority living alone (n=12, 63%). When assessing health-related quality of life, patients’ general health perception was low (34%), with significant impairment noted in physical role functioning (21%), and vitality (35%). Perceived social support was high, with 78% of patients noting they had a special person they could rely on in need, and someone they could share their feelings with. Our caregiver survey did not reveal any significant burnout trends. Caregivers expressed they were happy to care for their loved one (80%, n=8), and when asked whether they felt resentment or anger towards their spouse or family member, (80%, n=8) said never. Given the exploratory nature and small sample size of the study, we did not run statistical analyses. Conclusions Overall, our study revealed that patients with decompensated cirrhosis experience low health-related quality of life, however feel supported by their caregivers. Caregivers did not express significant burnout at first post-discharge visit. Larger studies and longitudinal data would be helpful to better characterize the patient experience in advanced cirrhosis. Funding Agencies The Ottawa Hospital Academic Medical Organization (TOHAMO) Quality & Patient Safety Grant
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Boquet, Jaime R., Debra Parker Oliver, Elaine Wittenberg-Lyles, Ardith Z. Doorenbos, and George Demiris. "Taking Care of a Dying Grandparent." American Journal of Hospice and Palliative Medicine® 28, no. 8 (April 26, 2011): 564–68. http://dx.doi.org/10.1177/1049909111405644.
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This study aims to provide insight into the role of grandchildren as informal hospice caregivers. It presents 4 cases that highlight the challenges and perceptions of grandchildren who care for a grandparent at the end of life. A researcher met regularly with family caregivers to discuss the problems or challenges during hospice caregiving. Although each caregiver presented unique individual experiences, several themes are common among the family caregivers including fatigue, stress, guilt, and loss of the “grandchild” identity. Grandchildren caregivers often take care of 3 generations (grandparents, parents, and children) and in many cases need additional assistance to help them overcome the challenges associated with managing a household, career, family, and caregiving roles.
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Funk, Laura M., Diane E. Allan, and Kelli I. Stajduhar. "Palliative family caregivers' accounts of health care experiences: The importance of “security”." Palliative and Supportive Care 7, no. 4 (November 26, 2009): 435–47. http://dx.doi.org/10.1017/s1478951509990447.
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AbstractObjective:When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.Methods:A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.Results:Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.Significance of results:The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.
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Strauss, Susan, Erin Ann Kitt-Lewis, and Michael Amory. "“I Don’t Feel Like I Have Any Control of My Life at All . . . Everything Overwhelms Me. Everything”: Analyzing Caregiver Uncertainty and Control Through Stance Marking." Qualitative Health Research 29, no. 12 (April 23, 2019): 1794–809. http://dx.doi.org/10.1177/1049732319840283.
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Informal caregivers immersed in the daily care of loved ones at end-of-life stages face such challenges as medical and household issues, worries, doubts, and uncertainties. Using a macro-mezzo-micro approach to discourse, we analyzed parent study interview data involving 46 caregivers facing end-of-life realities. At the mezzo level, we examined caregivers’ expressed perceptions of control. We then more finely analyzed discursive expressions of affective stances pertaining to caregivers’ emotions and feelings, and epistemic stances pertaining to their knowledge and belief states. Theories of uncertainty and control inextricably interweave areas of cognition, affect, and behavior regarding how caregivers perceive their realities and how they engage in or disengage from coping mechanisms in the process. The findings in this three-tiered approach make salient specific discursive patterns gleaned from systematic and fastidious attention to caregivers’ own ways of using language that methodically afford deeper entry into the emotional, physical, and cognitive challenges in their everyday lived experiences.
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Kerba, Marc, Shireen Kassam, Crystal Beaumont, Patricia Biondo, Madalene Earp, Patricia A. Tang, Jessica Simon, Sharon Watanabe, and Aynharan Sinnarajah. "Living with advanced colorectal cancer: How prepared are informal caregivers to care for their loved ones?" Journal of Clinical Oncology 37, no. 27_suppl (September 20, 2019): 179. http://dx.doi.org/10.1200/jco.2019.37.27_suppl.179.
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179 Background: The ‘Living with Colorectal Cancer’ prospective cohort study seeks to characterize the experiences of patients diagnosed with advanced colorectal cancer and their caregivers, in order to inform care improvements. Here we describe informal caregivers’ perceived preparedness for caregiving. Methods: Eligible patients were identified by oncologists in Alberta, Canada’s two tertiary cancer centers. Consenting patients were given the option to invite a caregiver to participate. Caregivers’ preparedness for caregiving was assessed at enrollment and every 3 months thereafter using the Preparedness for Caregiving survey. This survey assesses levels of preparedness using 5-point Likert scales for 8 caregiving domains (e.g. caring for the patient’s physical and emotional needs, finding and setting up services, stress of caregiving, responding to emergencies), and one open-ended question. Results: In one year of recruitment, 55 caregivers in Calgary and Edmonton were enrolled, of which 65% were female, and 80% lived with the patient. Caregiver preparedness decreased over time from months 1 to 7 of follow-up, across all categories. Caregivers were least prepared for the stress of caregiving and caring for the patient’s emotional needs. They were most prepared for taking care of the patient’s physical needs at enrollment. Open-ended comments on specific preparedness needs were numerous and extensive. A range of topics were reported, the top three being: caregiver health (physical, mental, self-care), emotional aspects (preparing children and family, feeling alone) and end of life (hospice, palliative care, transitioning). Conclusions: Our data suggest that in the advanced cancer setting, caregiver perceived preparedness declines, with increasing stress and emotional distress over time. This may be related to patient illness progression. The open-ended qualitative comments on the Preparedness for Caregiving survey were particularly useful in understanding specific caregiver concerns. Caregiver experience, including sense of preparedness, is often under evaluated and this study suggests more attention is needed. Clinical trial information: NCT03572101.
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Patinadan, Paul Victor, Geraldine Tan-Ho, Ping Ying Choo, Casuarine Xinyi Low, and Andy Hau Yan Ho. "‘Food for Life and Palliation (FLiP)’: a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia." BMJ Open 11, no. 4 (April 2021): e038914. http://dx.doi.org/10.1136/bmjopen-2020-038914.
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ObjectivesWith ‘eating’ posited as Singapore’s domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the ‘food voices’ of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications.SettingHomes of patients within the Singaporean palliative care setting.ParticipantsA subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families.ResultsFramework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment.ConclusionsClinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.
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Wallace, Cara L., Dulce M. Cruz-Oliver, Jennifer E. Ohs, and Leslie Hinyard. "Connecting Personal Experiences of Loss and Professional Practices in Advance Care Planning and End-of-Life Care: A Survey of Providers." American Journal of Hospice and Palliative Medicine® 35, no. 11 (June 21, 2018): 1369–76. http://dx.doi.org/10.1177/1049909118783736.
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Background: Although practitioners overwhelmingly agree on the importance of advance care planning (ACP) and preparing for the end of life (EOL), the process is fraught with barriers. Objective: The goal of this research was to explore potential connections between providers’ own personal experiences and current professional practices in ACP and EOL care. Design: A cross-sectional survey design, gathering voluntary, anonymous responses from participants between August and December 2016. The survey sought information from providers in 3 distinct areas: (1) personal experiences of loss, (2) personal ACP, and (3) professional practices related to ACP and EOL care. Setting/Participants: One hundred and ninety health-care professionals (primarily physicians, nurses, and social workers) participated in the survey across a greater, Metropolitan area in the Midwest. Measurements: Questions for professional practices were subscales from the End-of-Life Professional Caregiver Survey: Patient- and Family-Centered Communication (PFCC) and Effective Care Delivery (ECD). Questions developed by the research team were evaluated by judges chosen for clinical and/or research expertise. Results: Numerous connections were found between professionals’ histories of loss, personal ACP, and professional practices. For example, both clinicians with personal experience caring for someone who is dying and clinicians who had completed their own ACP scored higher in both PFCC and ECD and were more likely to refer patients to hospice and palliative care. Conclusions: Results support educational interventions involving opportunities for reflection and completion and communication about ACP. Additionally, educational opportunities for students in health care should focus on incorporating both ACP and greater exposure to hospice and palliative care.
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Stanley, Sarah, and Amara Callistus Nwosu. "Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients." AMRC Open Research 3 (January 11, 2021): 3. http://dx.doi.org/10.12688/amrcopenres.12961.1.
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As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research. Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen. In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.
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Luijkx, Katrien G., and Jos M. G. A. Schols. "Volunteers in Palliative Care Make A Difference." Journal of Palliative Care 25, no. 1 (March 2009): 30–39. http://dx.doi.org/10.1177/082585970902500104.
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Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. In four sequential studies, information was gathered from focus groups (n=22), a survey (n=237), individual interviews (n=6), and an Internet panel (n=1,712). The focus groups revealed that volunteers can make the last phase of life less stressful for family caregivers by offering practical and emotional support, and this was confirmed by the survey; however, one improvement is needed: every volunteer support should be concluded with a closing contact. The individual interviews showed that in the end-of-life stage the crucial decision is whether the patient can remain at home, not whether the caregiver needs volunteer support; and in such extreme situations, it is understood that volunteer support must involve more than one volunteer. The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.
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Christian, Thomas, Joan Teno, Kyle Cobb, Sara Galantowicz, Alan Levitt, and Cindy Massuda. "Trends in the Receipt of Consistent Hospice Professional Visits at the End of Life and Ratings of Hospice Care Quality." Innovation in Aging 4, Supplement_1 (December 1, 2020): 70. http://dx.doi.org/10.1093/geroni/igaa057.228.
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Abstract Caregivers have identified consistent visits by professional hospice staff at the end of life as positively affecting experiences of care quality. Little is known about the prevalence of such visits. Using 100% Medicare hospice claims with discharge dates in Federal Fiscal Year 2018, we identified the rates of providing skilled nurse or social worker visits to hospice beneficiaries in at least two of the last three days of life and compared these rates to percentages of caregivers indicating they would “definitely” recommend the hospice and caregivers rating the hospice a 9 or 10 on a 10-scale from CAHPS Hospice scores. Among our analytic cohort of 762,238 hospice discharges, 509,585 individuals (66.9%) were visited by a nurse or social worker in at least two of the last three days of life. Beneficiaries lacking these visits were more likely to be black (black 39.6% vs. white 32.2%; AOR 1.32 95% CI 1.29-1.34) or resided in a nursing facility (nursing facility 37.7% vs. patient’s home 32.1%, AOR 1.39 95% CI 1.36-1.40). The mean hospice-level score for achieving these visits was 64.8% (median 70.2%; IQF 53.0%-80.9%). The Pearson’s correlation coefficients between hospice-level rates of visits at the end of life and the caregiver percentages for “definitely” recommending the hospice was 0.2418 and for rating the hospice a 9 or 10 on a 10-scale was 0.2587. These findings demonstrate significant variability across hospice providers and signal a positive correlation with caregivers’ quality ratings. Future work is needed to monitor the provision of these visits.
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Durieux, Brigitte N., Anna Berrier, Hannah Z. Catzen, Tamryn Gray, James A. Tulsky, and Justin J. Sanders. "“I think that she would have wanted...”: Caregiver reflections on goal-concordant care for patients with cancer at the end of life." Journal of Clinical Oncology 39, no. 28_suppl (October 1, 2021): 163. http://dx.doi.org/10.1200/jco.2020.39.28_suppl.163.
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163 Background: Experts recognize goal-concordant care (GCC) as among the most important outcomes for those with advanced cancer. Despite a conceptual understanding about ways to measure goal-concordant care, we know little about what patient experiences align perceptions of goal concordance. Caregivers’ close proximity to patients give them a unique perspective on what factors contribute to perceived goal concordance. Methods: We conducted semi-structured interviews with 19 recently bereaved family caregivers of those with cancer to understand their experience of care, the extent to which they felt it was goal-concordant, and the factors of care which contextualized their experience. Caregivers were interviewed using a semi-structured guide based on the end-of-life planning module in Round 2 of the National Health and Aging Trends Survey (NHATS). We used template analysis to identify themes across the 19 interviews. Results: Most caregivers reported goal-concordant care when prompted, though many also recalled moments of goal discordance. Three high-level themes characterized their care perceptions: communication, relationships and humanistic care, and care transitions. Sub-themes of communication included clinician communication quality, prognostic communication, and information gaps. First, clear and transparent clinician communication facilitated GCC and high-quality care. Prognostic communication that did not align to patient preferences or consider patient hope was seen as harmful. Information gaps inhibited high-quality care as well as caregivers’ confidence that decisions were goal concordant. Second, relationships between patients and their clinicians enriched care, and humanistic care was seen as higher-quality. Lastly, logistical barriers, the need for relationship rebuilding, uncertain information communication, and a general lack of coordination characterized perceptions around care transitions and goal discordance. In particular, several caregivers noted issues and inter-specialty tensions around transitions specifically involving hospice. Conclusions: Caregivers consistently rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Measures that capture goal-concordant care may be subject to psychological bias and may not clearly align with or predict other measures of care quality. Communication, relationships and humanistic care, and care transitions are all modifiable targets for quality improvement and deserve clear attention for patients with advanced cancer.
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Pooler, Charlotte, Janice Richman-Eisenstat, and Meena Kalluri. "Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences." Palliative Medicine 32, no. 9 (July 30, 2018): 1455–64. http://dx.doi.org/10.1177/0269216318789025.
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Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
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Engbers, Ruth Anne. "Informal Caregivers’ Perceptions of Needs From Hospice Providers: An Integrative Review." American Journal of Hospice and Palliative Medicine® 36, no. 12 (April 16, 2019): 1114–23. http://dx.doi.org/10.1177/1049909119842365.
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Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers. Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases. Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills. Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC’s transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
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Rhodus, Elizabeth, Graham Rowles, Shani Bardach, Elizabeth Hunter, and Gregory Jicha. "An Ecological Model of Care for Older Adults With Cognitive Impairment." Innovation in Aging 4, Supplement_1 (December 1, 2020): 154–55. http://dx.doi.org/10.1093/geroni/igaa057.503.
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Abstract Living with dementia causes increasing dependence on the surrounding physical and social environment. There is limited information on environmental interactions of persons with cognitive impairment. Based on participant observation and repeated interviews with both members of nine dyads (primary care partner and person with cognitive impairment) in situ in their homes, a theoretical model depicting environmental interaction was developed. The model illustrates parallel and interwoven environmental experiences of each member of the dyad as they negotiate progressive cognitive impairment. Evolution of the dyad is situated within nested layers of the physical and contextual environment including physical structures, social norms, and political environments. Experiential elements for each member of the dyad are described. Elements include cognitive status, trial and error associated with care provision, adverse behavior linked with onset of caregiver burden, onset of a significant event leading to altered living situations, and maximum dependence on environmental factors prior to end of life. Evidence collected suggests that both persons of the dyad become increasingly susceptible to environmental influences with progression of the disorder. Implication of these findings offer a theoretical framework describing dyadic experiences of environmental interactions when living with dementia. This theoretical model provides a basis for clinical and social intervention to enhance the well-being of both members of the dyad. Interventions associated with environmental interactions may slow socially discordant behavioral manifestations associated with dementia and significantly improve quality of life for both members of the dyad.
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Walsh, Kyle. "COVD-07. THE IMPACT OF COVID-19 ON PATIENTS AND CAREGIVERS AFFECTED BY BRAIN TUMORS: THE PATIENT NAVIGATOR PERSPECTIVE." Neuro-Oncology 22, Supplement_2 (November 2020): ii22. http://dx.doi.org/10.1093/neuonc/noaa215.091.
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Abstract BACKGROUND Preliminary evidence indicates that glioma patients are at higher risk for COVID-19 complications due to systemic immunosuppression. Interruptions in cancer care may exacerbate patient and caregiver anxiety, but surveying patients/caregivers about their COVID-19 experiences is often limited by attainable sample sizes and over-reliance upon single-institution experiences. METHODS To explore how COVID-19 is impacting brain tumor patients/caregivers across the U.S., we performed semi-structured interviews with brain tumor patient navigators employed by two different 501(c)3 nonprofit organizations. A semi-structured interview guide was used, utilizing prompts and open-ended questions to facilitate dialogue. A core set of COVID-19 topics were covered, including: financial issues, coping strategies, geographic variability, variability by tumor grade/histology, disruptions in care continuity, accessing clinical trials, psychosocial issues, and end-of-life care. Interviews were audio-recorded, transcribed, and organized by discussion topic to identify emerging themes. Inductive sub-coding was completed using the constant comparison method, within and between transcripts. RESULTS/CONCLUSIONS Ten patient navigators were interviewed between April 15th and May 8th, with interviews lasting approximately one hour (range 38-77minutes). Navigators reported having contact with 183 unique brain tumor families during the pandemic (range 7–38 families per navigator). High concordance emerged across narratives, revealing important considerations for the neuro-oncology workforce. The most prominent theme was increased caregiver burden, attributed to maintaining social distancing by reducing visits from home-health aides and friends/family. A related theme that applied to both patients and caregivers was increased social isolation due to social distancing, suspension of in-person support groups, and church/temple closures. Accessing clinical trials was a recurrent issue, exacerbated by patients’ increasing unwillingness to travel. Glioblastoma patients, especially those with recurrent tumors, expressed greater reluctance to travel. Access to standard-of-care treatment was rarely interrupted, but reduced access to supportive services – especially physical and occupational therapy – was identified as an emerging COVID-related deficiency in clinical care.
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Wallerstedt, Birgitta, Birgitta Andershed, and Eva Benzein. "Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities." Palliative and Supportive Care 12, no. 6 (June 20, 2013): 425–37. http://dx.doi.org/10.1017/s1478951513000333.
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AbstractObjective:To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.Methods:Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregationResults:Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.Significance of the research:Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.
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Revathy, S., V. Surendran, G. Prasanth, and B. Kalpana. "Quality of Death of Patients With Advanced Cancers in India." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 98s. http://dx.doi.org/10.1200/jgo.18.44200.
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Background: Death with dignity is a basic right of all patients with advanced cancer, whereas in India, the healthcare providers have not closely examined whether the end-of-life care promotes the quality of death. The quality of death analysis can give us an insight on the impact of the disease and palliative treatment on end-of-life care. Aim: This study aims to explore the quality of death of patients with advanced cancers. Methods: A mixed method study where the caregivers (n=108) of advanced cancer patients, who expired either during hospitalization or at home, were chosen through purposive sampling and interviewed to assess the quality of death, using validated caregiver ratings of patients' physical and mental distress on a scale of 0-10, along with an open ended question. The data thus obtained was analyzed using descriptive statistics, t-test and χ2 test. The transcripts and scores were analyzed through thematic analysis and descriptive statistics respectively. Results: The mean quality of life during the final week of the patients who had expired is 4.17 (SD=2.44), while the psychological and physical health are 5.27 (SD= 2.49) and 3.75 (SD= 2.30), respectively. Almost 60% of the patients were reported to have average to good quality of life during their final week, whereas 73.1% and 52.7% of the patients had average to good psychological and physical health respectively. The physical health was found to be significantly higher among men ( P = 0.000) and among those who were aware of their prognosis ( P = 0.000). Also, patients who had expired at the hospital were found to have significantly better physical health during their end-of-life, than those who had expired at home ( P = 0.006 ), whereas, the psychological health and overall quality of life of the patients did not differ significantly between the place of death. The most commonly reported reason by the caregivers for the patients' distress was physical suffering. Pain, lack of appetite, difficulty in breathing and compromised mobility, irrespective of the site, was reported by 41.6%, 38.8%, 25.9% and 27.7% respectively. Majority of the patients (65.7%) were not aware of their prognosis, thus leading to psychological distress pertaining to anticipation about survival and worsening of physical symptoms. Despite the high distress, 60% reportedly had moderate to high quality of life in their last week of life. The thematic analysis of the transcripts resulted in seven subthemes, which were categorized under four major themes namely 'bodily discomfort', 'psychological experiences' with the subthemes moral emotions and emotional disturbances, 'awareness of prognosis' with the subthemes aware, unaware and conjecture and 'carers coping' with the subthemes perceived strain and contentment. Conclusion: Although the quality of life of patients under end of life care was perceived to be good, they suffered physically and psychologically, as reported by the caregivers.
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Ho, Julia Fee Voon, Hayati Yaakup, Grace Sook Hoon Low, Siew Lih Wong, Lye Mun Tho, and Seng Beng Tan. "Morphine use for cancer pain: A strong analgesic used only at the end of life? A qualitative study on attitudes and perceptions of morphine in patients with advanced cancer and their caregivers." Palliative Medicine 34, no. 5 (February 27, 2020): 619–29. http://dx.doi.org/10.1177/0269216320904905.
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Background: The prevalence of undertreated cancer pain remains high. Suboptimal pain control affects quality of life and results in psychological and emotional distress. Barriers to adequate pain control include fear of opioid dependence and its side effects. Aim: To investigate the attitudes and perceptions of morphine use in cancer pain in advanced cancer patients and their caregivers and to examine the influence of caregivers’ attitudes and perceptions on patients’ acceptance of morphine. Design: Qualitative study involving semi-structured individual interviews transcribed verbatim and analyzed thematically. Setting/Participants: A total of 18 adult opioid-naïve patients with advanced cancer and 13 caregivers ( n = 31) were recruited at a private tertiary hospital via convenience sampling. Results: Attitudes and perceptions of morphine were influenced by previous experiences. Prevalent themes were similar in both groups, including perceptions that morphine was a strong analgesic that reduced suffering, but associated with end-stage illness and dependence. Most participants were open to future morphine use for comfort and effective pain control. Trust in doctors’ recommendations was also an important factor. However, many preferred morphine as a last resort because of concerns about side effects and dependence, and the perception that morphine was only used at the terminal stage. Caregivers’ attitudes toward morphine did not affect patients’ acceptance of morphine use. Conclusion: Most participants were open to future morphine use despite negative perceptions as they prioritized optimal pain control and reduction of suffering. Focused education programs addressing morphine misperceptions might increase patient and caregiver acceptance of opioid analgesics and improve cancer pain control.
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Merlo, Domenico Franco, Monica Beccaro, Massimo Costantini, Massimo Costantini, Monica Beccaro, Silvia Di Leo, Maria Pia Sormani, et al. "An Unconventional Cancer Treatment Lacking Clinical Efficacy Remains Available to Italian Cancer Patients." Tumori Journal 94, no. 6 (November 2008): 830–32. http://dx.doi.org/10.1177/030089160809400609.
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Aims and Background An unconventional cancer treatment known as “Di Bella multitherapy” gained popularity among Italian cancer patients during the 90's. In 1999, it was shown to lack any detectable antitumor activity. Access to the multitherapy was investigated three years later within the post-bereavement Italian Survey of the Dying of Cancer (ISDOC), whose broader aim was to investigate the end-of-life care experiences of terminal cancer patients. Methods ISDOC was carried out in a two-stage probability sample of 2,000 out of 160,000 Italian cancer patients deceased between March 2002 and June 2003. For each cancer patient, a non-professional caregiver, i.e., the closest and the best-informed person about her/his last three months of life, was identified. A specific question concerning the “Di Bella multitherapy” was included in a semi-structured questionnaire that was administered face-to-face to the caregivers by trained interviewers. Weighted estimates of the frequency of patients receiving the multitherapy in the target population and their 95% confidence intervals were computed by taking into account stratification and clustering of observations. Results During their last three months of life, 0.7% (95% CI, 0.3–1.6) of terminal cancer patients, corresponding to some 1,100 subjects (range, 480–2,560), received the multitherapy. No statistically significant difference was observed for age at death, cancer type, gender, education, marital status, or residence. Conclusions The finding indicates that an unconventional cancer treatment proven to lack clinical efficacy remained accessible to Italian cancer patients. Ethical, deontologic, and economic implications call for a routine monitoring of provision of and access to unproven cancer treatments.
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Palacio G, Carolina, Alicia Krikorian, María José Gómez-Romero, and Joaquín T. Limonero. "Resilience in Caregivers: A Systematic Review." American Journal of Hospice and Palliative Medicine® 37, no. 8 (December 13, 2019): 648–58. http://dx.doi.org/10.1177/1049909119893977.
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Background: Resilience is a multidimensional construct that explains why people facing the consequences of adversity and stress can have a positive outcome, emphasizing adjustment to experiences that are perceived as threatening. Objective: The aim of this study is to review the construct of resilience and associated variables in caregivers of patients with chronic, advanced illness and at the end of life. Methods: The review included studies published between January 2009 and January 2019, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide reporting. The Medline, ScienceDirect, HINARI, PsychINFO, and SciELO databases were used for bibliographic exploration to identify research studies that examined the impact of resilience on adaptation and overall well-being in caregivers of patients with chronic and advanced illness. Results: A total of 23 quantitative and qualitative studies were identified whose aim was to describe the role of resilience in adaptation and coping in caregivers. In these studies, resilience was associated with a positive impact on the quality of life and emotional distress. Communication and social support increase resilient coping strategies. In most selected articles, the sampling strategy used was convenience sampling. Data collection used evaluation scales related to resilience and associated variables for quantitative studies, and semistructured interviews were used for qualitative studies. Conclusion: Promoting a resilient coping style in caregivers reduces the distress that normally results from illness-related changes in the biopsychosocial and spiritual dimensions. A resilient coping style can diminish the risk of stress and burden, and promote adaptation in the caregiver.
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Wright, Frances Catriona. "Early integration of palliative care in Ontario cancer settings." Journal of Clinical Oncology 35, no. 15_suppl (May 20, 2017): e18234-e18234. http://dx.doi.org/10.1200/jco.2017.35.15_suppl.e18234.
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e18234 Background: Introducing palliative care early in the cancer journey results in a better life quality, less aggressive care and possibly longer survival compared to patients receiving standard care. The INTEGRATE project aimed to identify and manage patients who may benefit from palliative care earlier in their cancer treatment. This pilot project assessed whether multidisciplinary forums (Multidisciplinary Cancer Conferences, Clinics and Diagnostic Assessment Programs ) could be used to identify patients using the UK Gold Standards Framework Surprise Question (SQ) “Would you be surprised if this person died within the next year?” Methods: Cancer centres volunteered to pilot test the efficacy of the SQ at multidisciplinary forums and implement a palliative model of care. A survey was completed at 3 different points during the project to measure provider comfort in providing palliative care. All sites received primary level palliative care education. Patient and caregiver experience were assessed using interviews and a validated survey. Identified patients received Advance Care Planning (ACP), symptom management, referrals and standardized reporting to primary care. Patient level data was collected. Results: 3 academic and 1 non-academic cancer centres used the SQ in multidisciplinary forums to identify patients in the Lung, Gastrointestinal and Central Nervous System disease sites between February '15-August '16. A baseline survey showed over 50% of providers had no palliative care training. 157 providers received education and at the end of the project providers had increased comfort & confidence in delivering palliative care. Analyses show that 933 patients were identified using the SQ, from which 78% had ACP initiated and 83% are receiving community palliative care services Conclusions: Multidisciplinary forums appear to be excellent for identifying patients who may benefit from a palliative approach to care. Inter-professional provider education and organized approaches to linking patients to community resources, had a positive impact on provider willingness to address end-of-life and palliative issues. Patients & caregivers report positive experiences of care, but different levels of ‘readiness’ to have the ACP discussions.
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Hansen, Lissi, Susan J. Rosenkranz, and Gina M. Vaccaro. "Living with terminal hepatocellular carcinoma: The patient and family perspective." Journal of Clinical Oncology 31, no. 15_suppl (May 20, 2013): e20702-e20702. http://dx.doi.org/10.1200/jco.2013.31.15_suppl.e20702.
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e20702 Background: Hepatocellular carcinoma (HCC) is a growing problem worldwide; incidence of HCC in the U.S. has increased from 1.4 to 2.4 per 100,000 primarily because of people infected by hepatitis B or C. For those diagnosed with intermediate-advanced or terminal HCC, there is no curative treatment, and duration of survival is typically one to two years. Despite a high death rate, no studies were found examining experiences of living with terminal HCC and how it may affect end of life care from perspectives of both patients and family members. Methods: This pilot study used a prospective, longitudinal descriptive design, and qualitative and quantitative methods (mixed methods). Interview and survey (symptoms, quality of life) data were collected once a month for a 6-month period from 20 patient-family member dyads. Two researchers independently coded transcribed interview data into synthesized themes using inductive analysis, and met regularly to establish consensus on coding disagreements. Results: This poster reports on interview data from a convenience sub-sample of 14 patient-family member dyads. The interview data set comprised 56 interviews (14 conducted with patients, 11 with family members, and 31 with patient-family member dyads). Of the 14 patients, 11 were male and 3 were female (mean age=61.5, range=54-68 years). Of the 14 family members, 4 were male and 10 were female (mean age=57.4, range=22-68 years). Eight patients died during the study period. Findings from patient-family member dyad interviews included 5 major themes: 1) comparing diseases—differences and similarities between HCC and other types of illnesses/cancers (e.g., breast cancer), 2) uncertainty about treatments over time, 3) symptom management, 4) lack of support, and 5) family member caregiving struggles. Differences were found between interviews conducted with patients only and family members only, including perceived challenges in patient-family member relationships. Conclusions: From this first step, knowledge gained will serve as the foundation for a larger scale study and test of future interventions to address challenges (e.g., symptom management, caregiver burden) at the end of life for these cancer patients and their family members.
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Papadakos, Janet, Arnav Agarwal, Rebecca Charow, Naa Kwarley Quartey, Anna D’souza, Meredith Giuliani, Barbara-Ann Millar, Christine Massey, David Shultz, and Caroline Chung. "Informational needs of brain metastases patients and their caregivers." Neuro-Oncology Practice 6, no. 1 (April 20, 2018): 47–60. http://dx.doi.org/10.1093/nop/npy008.
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Abstract Background In response to a dearth of formal health information targeted towards patients with brain metastases and their caregivers, a formal informational and supportive care needs assessment was conducted. Methods Brain metastases patients and caregivers who attended a clinic focused on the treatment of brain metastases at a tertiary medical center completed a self-report survey to assess informational needs across 6 domains: medical, physical, practical, social, emotional, and spiritual informational needs. Univariate and multivariate analyses of associations between variables was conducted using linear regression models. Results A total of 109 patients and 77 caregivers participated. Patients and caregivers both prioritized medical and physical informational domains, with a large focus on symptoms and side-effect profiles, significance of brain metastases locations and their implications, available treatment options and their risks and benefits, prognoses and follow-ups if treatment is completed, and end-of-life experiences and supports. One-on-one counseling was preferred by both caregivers and patients for these domains, as well as for practical informational needs; while patients preferred pamphlets to address social, emotional and spiritual informational needs, caregivers preferred one-on-one counseling for the former two domains as well. Conclusions Brain metastases patients and their caregivers prioritize medical and physical informational needs, with one-on-one counseling and pamphlets being the most preferred modalities for information provision. Further exploration regarding existing non-validated resources and the development of tailored resources to address the unique needs of these patient and caregiver populations are warranted.
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Gregorini, Anna Ines, Francesca Gaia Rossi, Sara Lodi Rizzini, Valeria Ferla, Giorgia Saporiti, Loredana Pettine, Mariarita Sciumè, et al. "Simoultaneous Home Palliative Care in Onco-Hematological Patients: An Italian Single Institution Experience." Blood 136, Supplement 1 (November 5, 2020): 2–3. http://dx.doi.org/10.1182/blood-2020-142631.
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Introduction Despite their high symptomatic burden, frequent quality of life impairment, and possible incurable evolution, patients (pts) with hematological malignancies are hardly ever referred to palliative care (PC) settings. The main reasons explaining the limited resort to PC specialists by hematologists include frequent transfusion need, common infectious complications, possible unpredictable disease course and the growing availability of new and potentially active therapeutic opportunities. Additional factors may include inadequate awareness of the PC landscape, the lack of PC specialist within the hematologic care team and their scarce attitude to address the end-of-life issues with pts and families. Lastly, an intensive psychological bond between pts and their hematologists might contribute to the patient's natural preference of the hospital also for the care of terminal disease. Nonetheless, growing reported experiences confirm an overall worse end-of-life managing outside of the PC specialized settings. Methods Starting from 01/2014, in our Institution we started a collaboration with a specialized PC team including both hospice and home settings organization for onco-hematological pts. Aiming to investigate the feasibility of the integration of simultaneous home PC with active and supportive therapies, including transfusion support, for the treatment of pts affected by advanced phase hematological malignancies, we retrospectively collected disease and clinical information from clinical charts of pts who were referred to PC. The database included most relevant information with regard to PC intervention, including evaluation of end-of-life managing. Data were analyzed by descriptive statistics. Results From 01/2014 to 02/2020, 79 pts (52% males) with an onco-hematological disease were referred to home PC. Since 14 pts (18%) required multiple phases of PC assistance during their disease history (12 pts were referred twice and 2 pts three times, respectively), a total of 95 palliative care pathways were identified. Pts characteristics at PC referral are listed in table 1. Median age at the time of referral to PC was 82 years (range 40-96). Onco-hematological disease was acute leukemia (AL) in 25%, multiple myeloma (MM) in 32%, lymphoma in 25% and myelodysplastic syndrome (MDS) or myeloproliferative neoplasms (MPN) in 19% of patients. 95% of pts were informed of their diagnosis, but only 25% of pts were fully aware of the prognosis. With 75% of pts permanently living with a relative and 4% living alone, family framework was considered fully appropriate in 47% of pts, acceptable in 42% and scarce in 11%; altogether, a professional caregiver was present in 39% of pts. At the home PC referral, only 24% of pts was self-sufficient in daily activities, even though 78% was totally conscious. Overall, 36% of the pts complained at least 3 relevant symptoms among pain, hallucination, confusion, agitation, sleep disorders, dyspnea, nausea, asthenia, anxiety and psychological distress. Median duration of the home PC was 36 days, widely ranging from 1 up to 304 days. Simultaneous PC occurred in 44 pts (56%), while 35 pts (44%) continued a primarily oral hematological therapy. 39 pts (49%) received blood components transfusions in the hospital during the home PC assistance, in accord with the PC specialist. Death eventually occurred at home in 58 patients (73%), in hospice in 8 patients (10%), and in hospital in 10 patients (13%) [Table 2]. Conclusions The population referred to our home PC organization included pts with various hematological malignancies. During home PC assistance, 56% of the pts continued to attend our onco-hematology department for monitoring visit during an ongoing oral hematological therapy (44%) and/or for blood transfusion support (49%). With the vast majority of pts eventually deceasing at home or in hospice, the integration of home PC both with active hematology treatment and transfusion support appears to be feasible, meaningfully improving end of life management of patients with advanced hematological malignancies. The experience of multiple home PC pathways during the disease course in a proportion of patients offers an interesting perspective for a possible planning of temporarily palliative support in onco-hematological pts, who sometimes could still strikingly benefit of active treatments, even in very advanced phase of their disease. Disclosures No relevant conflicts of interest to declare.