Search results for: palliative care approach
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 16210

Search results for: palliative care approach

16150 Euthanasia in Dementia Cases: An Interview Study of Dutch Physicians' Experiences

Authors: J. E. Appel, R. N. Bouwmeester, L. Crombach, K. Georgieva, N. O’Shea, T. I. van Rijssel, L. Wingens

Abstract:

The Netherlands has a unique and progressive euthanasia law. Even people with advanced neurodegenerative diseases, like dementia, can request euthanasia when an Advanced Euthanasia Directive (AED) was written. Although the law sets some guidelines, in practice many complexities occur. Especially doctors experience difficult situations, as they have to decide whether euthanasia is justified. Research suggests that this leads to an emotional burden for them, due to feelings of isolation, fear of prosecution, as well as pressures from patient, family, or society. Existing literature, however, failed to address problems arising in dementia cases in particular, as well as possible sources of support. In order to investigate these issues, semi-structured in-depth interviews with 20 Dutch general practitioners and elderly care physicians will be conducted. Results are expected to be obtained by the end of December 2017.

Keywords: dementia, euthanasia, general practitioners, elderly care physicians, palliative care

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16149 Breaking the Barriers: Exploring the Barriers to LGBTQ+ Accessing Palliative Care and the Hospice

Authors: Emma Worley, Mhairi De Sainte Croix, Savneet Lochab, Christopher Roberts, Mark Stroud, Mo Salehan, Kevin Jones

Abstract:

Awareness about the importance of teaching about diversity at medical school is growing. In the realm of diversity includes discussion around the LGBTQ+ community. At Bristol, diversity is taught in first or second year. However, echoing and expanding that teaching throughout the curriculum is needed. This feeds into the spiral curriculum but also highlights the relevance of the topic. It is well known that some people in the LGBTQ+ community struggle the access healthcare due to previous negative experiences. In 2019, 1 in 7 LGBTQ+ people avoided seeking medical care due to fears about discrimination. If people have fears about seeking medical help, then seeking help from Palliative care when they are at their most vulnerable situation can be even harder. To improve positive healthcare situations for people who identify as LGBTQ+ needs to start with talking. Along with some of our CTAs (clinical teaching assistants) we created a teaching session to explore the barriers faced by LGBTQ+ and incorporated communication stations into this. Our plan is to run this session as a three-hour session first discussing different topics: ethnical diversity, ‘coming out’, LGBTQ+ in the older generation, transgender. This will be followed by looking more closely at the barriers to accessing the hospice. The next part of the session will encompass two or three communication scenarios hopefully prompting further discussion and reflection on ways to improve our communication. The first scenario outline is a gay man/lesbian woman with lung cancer discussing options around the hospice. The second scenario is a transgender person with female genitalia who now has cervical cancer (as was not followed up on pap smears after the change of name). The third scenario is a HIV homosexual male patient who has been admitted with dementia. He has a partner but is not married. His next of kin is down as his parents but his parents do not know about his sexuality and HIV status. It allows discussion around confidentiality as well as broaching the meaning of ‘family’ in the LGBTQ+ community. We have chosen to pitch this teaching session to Bristol Year 4 students. They will be currently doing their 6-week Palliative care block, which fits in well. Each session will have four students attend. We have been lucky enough to have two CTAs (clinical teaching assistants) who identify as LGBTQ+ offer their experiences and help. They have been able to help us with the preparation and delivery of the session. Given anecdotal evidence and stories helps to highlight the importance and relevance of this session. The aim is to increase awareness of some factors that may contribute to people who identify as LGBTQ+ having a negative healthcare experience. By starting to talk about it allows awareness and only then will we be able to start to change and improve. Our aim, if the sessions run well, is to expand these sessions to different academy hospitals. Therefore, all Bristol 4th year students would have the opportunity to take part in the teaching session. We would like to expand our portfolio of case scenarios, to address so tricker topics such as a transgender person with dementia who reverts back to a different gender. We would also like to recruit a diverse range of actors, ideally people who identify as the patient in the scenario does. For example, a transgender person acts the transgender scenario. This would give authenticity and enhance the student’s learning experience.

Keywords: communication skills, healthcare barriers, LGBTQ+, palliative care

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16148 Service Blueprinting: A New Application for Evaluating Service Provision in the Hospice Sector

Authors: L. Sudbury-Riley, P. Hunter-Jones, L. Menzies, M. Pyrah, H. Knight

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Just as manufacturing firms aim for zero defects, service providers strive to avoid service failures where customer expectations are not met. However, because services comprise unique human interactions, service failures are almost inevitable. Consequently, firms focus on service recovery strategies to fix problems and retain their customers for the future. Because a hospice offers care to terminally ill patients, it may not get the opportunity to correct a service failure. This situation makes the identification of what hospice users really need and want, and to ascertain perceptions of the hospice’s service delivery from the user’s perspective, even more important than for other service providers. A well-documented and fundamental barrier to improving end-of-life care is a lack of service quality measurement tools that capture the experiences of user’s from their own perspective. In palliative care, many quantitative measures are used and these focus on issues such as how quickly patients are assessed, whether they receive information leaflets, whether a discussion about their emotional needs is documented, and so on. Consequently, quality of service from the user’s perspective is overlooked. The current study was designed to overcome these limitations by adapting service blueprinting - never before used in the hospice sector - in order to undertake a ‘deep-dive’ to examine the impact of hospice services upon different users. Service blueprinting is a customer-focused approach for service innovation and improvement, where the ‘onstage’ visible service user and provider interactions must be supported by the ‘backstage’ employee actions and support processes. The study was conducted in conjunction with East Cheshire Hospice in England. The Hospice provides specialist palliative care for patients with progressive life-limiting illnesses, offering services to patients, carers and families via inpatient and outpatient units. Using service blueprinting to identify every service touchpoint, in-depth qualitative interviews with 38 in-patients, outpatients, visitors and bereaved families enabled a ‘deep-dive’ to uncover perceptions of the whole service experience among these diverse users. Interviews were recorded and transcribed, and thematic analysis of over 104,000 words of data revealed many excellent aspects of Hospice service. Staff frequently exceed people’s expectations. Striking gratifying comparisons to hospitals emerged. The Hospice makes people feel safe. Nevertheless, the technique uncovered many areas for improvement, including serendipity of referrals processes, the need for better communications with external agencies, improvements amid the daunting arrival and admissions process, a desperate need for more depression counselling, clarity of communication pertaining to actual end of life, and shortcomings in systems dealing with bereaved families. The study reveals that the adapted service blueprinting tool has major advantages of alternative quantitative evaluation techniques, including uncovering the complex nature of service user’s experiences in health-care service systems, highlighting more fully the interconnected configurations within the system and making greater sense of the impact of the service upon different service users. Unlike other tools, this in-depth examination reveals areas for improvement, many of which have already been implemented by the Hospice. The technique has potential to improve experiences of palliative and end-of-life care among patients and their families.

Keywords: hospices, end-of-life-care, service blueprinting, service delivery

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16147 Digital Advance Care Planning and Directives: Early Observations of Adoption Statistics and Responses from an All-Digital Consumer-Driven Approach

Authors: Robert L. Fine, Zhiyong Yang, Christy Spivey, Bonnie Boardman, Maureen Courtney

Abstract:

Importance: Barriers to traditional advance care planning (ACP) and advance directive (AD) creation have limited the promise of ACP/AD for individuals and families, the healthcare team, and society. Reengineering ACP by using a web-based, consumer-driven process has recently been suggested. We report early experience with such a process. Objective: Begin to analyze the potential of the creation and use of ACP/ADs as generated by a consumer-friendly, digital process by 1) assessing the likelihood that consumers would create ACP/ADs without structured intervention by medical or legal professionals, and 2) analyzing the responses to determine if the plans can help doctors better understand a person’s goals, preferences, and priorities for their medical treatments and the naming of healthcare agents. Design: The authors chose 900 users of MyDirectives.com, a digital ACP/AD tool, solely based on their state of residence in order to achieve proportional representation of all 50 states by population size and then reviewed their responses, summarizing these through descriptive statistics including treatment preferences, demographics, and revision of preferences. Setting: General United States population. Participants: The 900 participants had an average age of 50.8 years (SD = 16.6); 84.3% of the men and 91% of the women were in self-reported good health when signing their ADs. Main measures: Preferences regarding the use of life-sustaining treatments, where to spend final days, consulting a supportive and palliative care team, attempted cardiopulmonary resuscitation (CPR), autopsy, and organ and tissue donation. Results: Nearly 85% of respondents prefer cessation of life-sustaining treatments during their final days whenever those may be, 76% prefer to spend their final days at home or in a hospice facility, and 94% wanted their future doctors to consult a supportive and palliative care team. 70% would accept attempted CPR in certain limited circumstances. Most respondents would want an autopsy under certain conditions, and 62% would like to donate their organs. Conclusions and relevance: Analysis of early experience with an all-digital web-based ACP/AD platform demonstrates that individuals from a wide range of ages and conditions can engage in an interrogatory process about values, goals, preferences, and priorities for their medical treatments by developing advance directives and easily make changes to the AD created. Online creation, storage, and retrieval of advance directives has the potential to remove barriers to ACP/AD and, thus, to further improve patient-centered end-of-life care.

Keywords: Advance Care Plan, Advance Decisions, Advance Directives, Consumer; Digital, End of Life Care, Goals, Living Wills, Prefences, Universal Advance Directive, Statements

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16146 Factors Affecting Treatment Resilience in Patients with Oesophago-Gastric Cancers Undergoing Palliative Chemotherapy: A Literature Review

Authors: Kiran Datta, Daniella Holland-Hart, Anthony Byrne

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Introduction: Oesophago-gastric (OG) cancers are the fifth commonest in the UK, accounting for over 12,000 deaths each year. Most patients will present at later stages of the disease, with only 21% of patients with stage 4 disease surviving longer than a year. As a result, many patients are unsuitable for curative surgery and instead receive palliative treatment to improve prognosis and symptom burden. However, palliative chemotherapy can result in significant toxicity: almost half of the patients are unable to complete their chemotherapy regimen, with this proportion rising significantly in older and frailer patients. In addition, clinical trials often exclude older and frailer patients due to strict inclusion criteria, meaning there is limited evidence to guide which patients are most likely to benefit from palliative chemotherapy. Inappropriate chemotherapy administration is at odds with the goals of palliative treatment and care, which are to improve quality of life, and this also represents a significant resource expenditure. This literature review aimed to examine and appraise evidence regarding treatment resilience in order to guide clinicians in identifying the most suitable candidates for palliative chemotherapy. Factors influencing treatment resilience were assessed, as measured by completion rates, dose reductions, and toxicities. Methods: This literature review was conducted using rapid review methodology, utilising modified systematic methods. A literature search was performed across the MEDLINE, EMBASE, and Cochrane Library databases, with results limited to papers within the last 15 years and available in English. Key inclusion criteria included: 1) participants with either oesophageal, gastro-oesophageal junction, or gastric cancers; 2) patients treated with palliative chemotherapy; 3) available data evaluating the association between baseline participant characteristics and treatment resilience. Results: Of the 2326 papers returned, 11 reports of 10 studies were included in this review after excluding duplicates and irrelevant papers. Treatment resilience factors that were assessed included: age, performance status, frailty, inflammatory markers, and sarcopenia. Age was generally a poor predictor for how well patients would tolerate chemotherapy, while poor performance status was a better indicator of the need for dose reduction and treatment non-completion. Frailty was assessed across one cohort using multiple screening tools and was an effective marker of the risk of toxicity and the requirement for dose reduction. Inflammatory markers included lymphopenia and the Glasgow Prognostic Score, which assessed inflammation and hypoalbuminaemia. Although quick to obtain and interpret, these findings appeared less reliable due to the inclusion of patients treated with palliative radiotherapy. Sarcopenia and body composition were often associated with chemotherapy toxicity but not the rate of regimen completion. Conclusion: This review demonstrates that there are numerous measures that can estimate the ability of patients with oesophago-gastric cancer to tolerate palliative chemotherapy, and these should be incorporated into clinical assessments to promote personalised decision-making around treatment. Age should not be a barrier to receiving chemotherapy and older and frailer patients should be included in future clinical trials to better represent typical patients with oesophago-gastric cancers. Decisions regarding palliative treatment should be guided by these factors identified as well as patient preference.

Keywords: frailty, oesophago-gastric cancer, palliative chemotherapy, treatment resilience

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16145 Palliative Care Referral Behavior Among Nurse Practitioners in Hospital Medicine

Authors: Sharon Jackson White

Abstract:

Purpose: Nurse practitioners (NPs) practicing within hospital medicine play a significant role in caring for patients who might benefit from palliative care (PC) services. Using the Theory of Planned Behavior, the purpose of this study was to examine the relationships among facilitators to referral, barriers to referral, self-efficacy with end-of-life discussions, history of referral, and referring to PC among NPs in hospital medicine. Hypotheses: 1) Perceived facilitators to referral will be associated with a higher history of referral and a higher number of referrals to PC. 2) Perceived barriers to referral will be associated with a lower history of referral and a lower number of referrals to PC. 3) Increased self-efficacy with end-of-life discussions will be associated with a higher history of referral and a higher number of referrals to PC. 4) Perceived facilitators to referral, perceived barriers to referral, and self–efficacy with end-of-life discussions will contribute to a significant variance in the history of referral to PC. 5) Perceived facilitators to referral, perceived barriers to referral, and self–efficacy with end-of-life discussions will contribute to a significant variance in the number of referrals to PC. Significance: Previous studies of referring patients to PC within the hospital setting care have focused on physician practices. Identifying factors that influence NPs referring hospitalized patients to PC is essential to ensure that patients have access to these important services. This study incorporates the SNRS mission of advancing nursing research through the dissemination of research findings and the promotion of nursing science. Methods: A cross-sectional, predictive correlational study was conducted. History of referral to PC, facilitators to referring to PC, barriers to referring to PC, self-efficacy in end-of-life discussions, and referral to PC were measured using the PC referral case study survey, facilitators and barriers to PC referral survey, and self-assessment with end-of-life discussions survey. Data were analyzed descriptively and with Pearson’s Correlation, Spearman’s Rho, point-biserial correlation, multiple regression, logistic regression, Chi-Square test, and the Mann-Whitney U test. Results: Only one facilitator (PC team being helpful with establishing goals of care) was significantly associated with referral to PC. Three variables were statistically significant in relation to the history of referring to PC: “Inclined to refer: PC can help decrease the length of stay in hospital”, “Most inclined to refer: Patients with serious illnesses and/or poor prognoses”, and “Giving bad news to a patient or family member”. No predictor variables contributed a significant variance in the number of referrals to PC for all three case studies. There were no statistically significant results showing a relationship between the history of referral and referral to PC. All five hypotheses were partially supported. Discussion: Findings from this study emphasize the need for further research on NPs who work in hospital settings and what factors influence their behaviors of referring to PC. Since there is an increase in NPs practicing within hospital settings, future studies should use a larger sample size and incorporate hospital medicine NPs and other types of NPs that work in hospitals.

Keywords: palliative care, nurse practitioners, hospital medicine, referral

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16144 Bereavement Risk Assessment of Family Caregivers of Patients with Cancer: Relationship between Bereavement Risk and Post-Loss Psychological Distress

Authors: Tomohiro Uchida, Noriaki Satake, Toshimichi Nakaho, Akira Inoue, Hidemitsu Saito

Abstract:

In this study, we assessed the bereavement risk of family caregivers of patients with cancer. In the palliative care unit of Tohoku University Hospital, we conducted a family psychoeducation session to support the family caregivers of patients with cancer. A total of 50 participants (8 males and 42 females; mean age = 62.98 years, SD = 11.10) were assessed after the session for bereavement risk using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). According to the BRAT-J scores, eight participants were considered to be having no known risk (Level 1), seventeen had minimal risk (Level 2), twenty had a low risk (Level 3), four had a moderate risk (Level 4), and one had a high risk (Level 5). Of these participants, seven participants had completed the follow-up postal survey that assessed their psychological distress (the Kessler Psychological Distress Scale: K6) to compare the bereavement risk. According to the K6 scores, three-fourth of the individuals, who were considered to be at Level 3 on the BRAT-J, scored higher than the cutoff point (>10) for the detection of depressive disorder. On the other hand, one-third of the individuals, who were considered to be at Level 2 on the BRAT-J, scored higher than the cutoff point. Therefore, it appears that the BRAT-J can predict the likelihood of difficulties or complications in bereaved family caregivers. This research was approved by the Ethics Committee of Tohoku University Graduate School of Medicine and Tohoku University Hospital.

Keywords: palliative care, family caregivers, bereavement risk, BRAT, post-loss psychological distress

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16143 A Quality Improvement Project on Eye Care in the Intensive Care Unit

Authors: Julius Lenaerts, Ahmed Elsaadawy, Mohammed Bashir

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Background Sedated and paralyzed patients have an impaired blink reflex leading to ophthalmic complications such as conjunctivitis, epithelial defects, bacterial keratitis, and more. These are entirely preventable complications through regular eye care. Methods Patients at level 3 or above (intubated/paralyzed) care in the Intensive Care Unit (ICU) were reviewed between February and April. Data was pulled from Metavision and adherence was compared to Royal College of Ophthalmology (RCOphth) recommendations[4]. Using a multi-pronged approach through posters, individual teaching sessions and faculty teaching, we aimed to educate staff about eye care in the ICU. Patients were reaudited in the period July to August. Results Out of 40 patients, only 23% were assessed for eye care needs on admission compared to 77% after teaching; eye care was only delivered 59% of the time it was due, compared to 61%; 2.5% of patients had eyedrops prescribed compared to 41%. This shows an overall increase in meeting RCOphth standards. Key messages Eye care is an overlooked aspect of patient care in the ICU, associated with avoidable ocular complications. Healthcare staff need further rigorous education on the provision and importance of eye care to reduce avoidable complications.

Keywords: ICU, eye care, risk, QIP

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16142 Fathers’ Rights to Contact and Care: Moving Beyond the Adversarial Approach

Authors: Wesahl Domingo, Prinslean Mahery

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Our paper focuses on the rights’ to contact and care of fathers in the heterosexual context, despite the reality of same sex parenting in South Africa. We argue that despite the new South African Children’s Act framework creating a shift from the idea of parental power over a child to the notion that parents have parental responsibilities and rights in respect of a child. This shift has however not fundamentally changed the constant battle that parents and other interested parties have over children. In most cases it is fathers who must battle to either maintain contact with their child/ren or fight to have care (which includes custody) of their child/ren. This is the case whether or not the father was married to the mother of the child in question. In part one of the paper, we deal with the historical development of rights to care and contact and describe the current system in the context of case law and legislation in South Africa. Part two provides a critical analysis of a few anthologies of “what fathers are complaining about.” In conclusion, in part three, we outline the way forward –“moving beyond the adversarial approach” through the “care of ethics approach.” So what is the care perspective? The care perspective is a relational ethic which views the primary moral concern as of creating and sustaining responsive connection to others. We apply the care of ethics approach to parenting plans and family law mediation in the context of fathers’ rights to care and contact. We argue by avoiding the adversarial system and engaging in a problem solving process focused on finding solutions for the future, divorcing parents can turn their attention to their children rather than battling each other.

Keywords: fathers' right to care, contact, custody, family law

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16141 Exploring the Effectiveness of End-Of-Life Patient Decision Add in the ICU

Authors: Ru-Yu Lien, Shih-Hsin Hung, Shu-Fen Lu, Ju-Jen Shie, Wen-Ju Yang, Yuann-Meei Tzeng, Chien-Ying Wang

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Background: The quality of care in intensive care units (ICUs) is crucial, especially for terminally ill patients. Shared decision-making (SDM) with families is essential to ensure appropriate care and reduce suffering. Aim: This study explores the effectiveness of an end-of-life decision support Patient Decision Aid (PDA) in an ICU setting. Methods: This study employed a cross-sectional research design conducted in an ICU from August 2020 to June 2023. Participants included family members of end-of-life patients aged 20 or older. A total of 319 participants. Family members of end-of-life patients received the PDA, and data were collected after they made medical decisions. Data collection involved providing family members with a PDA during family meetings. A post-PDA questionnaire with 17 questions assessed PDA effectiveness and anxiety levels. Statistical analysis was performed using SPSS 22.0. Results: The PDA significantly reduced anxiety levels among family members (p < 0.001). It helped them organize their thoughts, prepare for discussions with doctors, and understand critical decision factors. Most importantly, it influenced decision outcomes, with a shift towards palliative care and withdrawal of life-sustaining treatment. Conclusion: This study highlights the importance of family-centered end-of-life care in ICUs. PDAs promote informed decision-making, reduce conflicts, and enhance patient and family involvement. These tools align patient values and goals with medical recommendations, ultimately leading to decisions that prioritize comfort and quality of life. Implementing PDAs in healthcare systems can ensure that patients' care aligns with their values.

Keywords: shared decision-making, patient decision aid, end-of-life care, intensive care unit, family-centered care

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16140 The Role and Tasks of a Social Worker in the Care of a Terminally Ill Child with Regard to the Malopolska Hospice for Children

Authors: Ewelina Zdebska

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A social worker is an integral part of an interdisciplinary team working with the child and his family in a terminal state. Social support is an integral part of the medical procedure in the care of hospice. This is the basis and prerequisite of full treatment and good care of the child - patient, whose illness often finds at least the expected period of his life when his personal and legal issues are not regulated, and the family burdened with the problem requires care and support specialists - professionals. Hospice for Children in Krakow: a palliative care team operating in the province of Krakow and Malopolska, conducts specialized care for terminally ill children in place of their residence from the time when parents and doctors decided to end of treatment in hospital, allows parents to carry out medical care at home, provides parents social and legal assistance and provides care, psychological support and friendship to families throughout the life of the child's illness and after his death, as long as it is needed. The social worker in a hospice does not bear the burden of solving social problems, which is the responsibility of other authorities, but provides support possible and necessary at the moment. The most common form of assistance is to provide information on benefits, which for the child and his family may be subject to any treatment and fight for the life and health of a child. Employee assists in the preparation and completion of documents, requests to increase the degree of disability because of progressive disease or Allowance care because of the inability to live independently. It works in settling all the issues with the Department of Social Security, as well as with the Municipal and District Team Affairs of disability. Seeking help and support using multi-faceted childcare. With the Centres for Social Welfare contacts are also often on the organization of additional respite care for the sick at home (care), especially in the work of the other members of the family or if the family can not cope with the care and needs extra help. Hospice for Children in Cracow completing construction of Poland's first Respite Care Centre for chronically and terminally ill children, will be an open house where children suffering from chronic and incurable diseases and their families can get professional help, whenever - when they need it. The social worker has to pick up a very important role in caring for a terminally ill child. His presence gives a little patient and family the opportunity to be at this difficult time together while organizing assistance and support.

Keywords: social worker, care, terminal care, hospice

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16139 Ethical Considerations in the Execution of Post-Fuel Subsidy Removal Support Initiatives in Kwara State, Nigeria: A Focus from Islamic Principles

Authors: Muhammad Jum’at Dasuki

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This study investigates the ethical implications of post-fuel subsidy removal support initiatives in Kwara State, Nigeria, with a focus on the application of Islamic principles. The contentious issue of subsidy removal carries significant social and economic consequences, emphasizing the crucial role of ethical considerations in policy implementation. The research provides a comprehensive background on fuel subsidy removal in Nigeria and its implications. Examining post-fuel subsidy removal palliative measures in Kwara State, the study focuses on design and implementation challenges, ethical considerations, transparency, equity, and public trust. Utilizing a case study approach offers insights and best practices. The methodology includes primary sources through in-depth oral interviews and secondary sources like textbooks and journals, aiming for a holistic understanding of the ethical dimensions of support initiatives within the context of Islamic principles in Kwara State. The objective is to contribute to policy decisions and community development. The study recommends an ethically sound implementation of post-fuel subsidy removal support initiatives, emphasizing transparency, accountability, and inclusivity. It advocates for the inclusiveness of governmental palliatives, reaching both civil servants and common individuals in the state. Continuous distribution during fuel subsidy removal challenges is deemed vital. Additionally, extending free or subsidized transportation beyond higher institutions to the general populace is suggested. Consideration should also be given to reducing governmental hospital bills or providing free health services. The study underscores the importance of Islamic ethics in Nigerian governance and employs a case study approach to assess palliative measures in Kwara State, offering practical insights for policymakers and stakeholders.

Keywords: considerations, ethical, palliative, post-fuel subsidy removal

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16138 Totally Implantable Venous Access Device for Long Term Parenteral Nutrition in a Patient with High Output Enterocutaneous Fistula Due to Advanced Malignancy

Authors: Puneet Goyal, Aarti Agarwal

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Background and Objective: Nutritional support is an integral part of palliative care of advanced non-resectable abdominal malignancy patients, though is frequently neglected aspect. Non-Healing high output Entero-cutaneous fistulas sometimes require long term parenteral nutrition, to take care of catabolism and replacement of nutrients. We present a case of inoperable pancreatic malignancy with high output entero-cutaneous fistula, which was provided parenteral nutritional support with the use of Totally Implantable Venous Access Device (TIVAD). Method and Results: 55 year old man diagnosed with carcinoma pancreas had developed high entero-cutaneous fistula. His tumor was found to be inoperable and was on total parenteral nutrition through routine central line. This line was difficult to maintain as he required it for a long term TPN. He was planned to undergo Totally Implantable Venous Access Device (TIVAD) implantation. 8Fr single lumen catheter with Groshong non-return Valve (Bard Access Systems, Inc. USA) was inserted through right internal jugular vein, under fluoroscopic guidance. The catheter was tunneled subcutaneously and brought towards infraclavicular pocket, cut at appropriate length and connected to port and locked. Port was sutured in floor of pocket. Free flow of blood aspirated, flushed with heparinized saline. There was no kink observed in entire length of catheter under fluoroscopy. Skin over infraclavicular pocket was sutured. Long term catheter care and associated risks were explained to patient and relatives. Patient continued to receive total parenteral nutrition as well as other supportive therapy though TIVAD for next 6 weeks, till his demise. Conclusion: TIVADs are standard of care for long term venous access solutions in cancer patients requiring chemotherapy. In this case, we extended its use for providing parenteral nutrition and other supportive therapy. TIVADs can be implanted in advanced cancer patients for providing venous access solution required for various palliative treatments and medications. This will help in improving quality of life and satisfaction amongst terminally ill cancer patients.

Keywords: parenteral nutrition, totally implantable venous access device, long term venous access, interventions in anesthesiology

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16137 Palliative Orthovoltage Radiotherapy and Subcutaneous Infusion of Carboplatin for Treatment of Appendicular Osteosarcoma in Dogs

Authors: Kathryn L. Duncan, Charles A. Kuntz, Alessandra C. Santamaria, James O. Simcock

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Access to megavoltage radiation therapy for small animals is limited in many locations around the world. This can preclude the use of palliative radiation therapy for the treatment of appendicular osteosarcoma in dogs. The objective of this study was to retrospectively assess the adverse effects and survival times of dogs with appendicular osteosarcoma that were treated with hypofractionated orthovoltage radiation therapy and adjunctive carboplatin chemotherapy administered via a single subcutaneous infusion. Medical records were reviewed retrospectively to identify client-owned dogs with spontaneously occurring appendicular osteosarcoma that was treated with palliative orthovoltage radiation therapy and a single subcutaneous infusion of carboplatin. Data recorded included signalment, tumour location, results of diagnostic imaging, haematologic and serum biochemical analyses, adverse effects of radiation therapy and chemotherapy, and survival times. Kaplan-Meier survival analysis was performed, and log-rank analysis was used to determine the impact of specific patient variables on survival time. Twenty-three dogs were identified that met the inclusion criteria. Median survival time for dogs was 182 days. Eleven dogs had adverse haematologic effects, 3 had adverse gastrointestinal effects, 6 had adverse effects at the radiation site and 7 developed infections at the carboplatin infusion site. No statistically significant differences were identified in survival times based on sex, tumour location, development of infection, or pretreatment serum alkaline phosphatase. Median survival time and incidence of adverse effects were comparable to those previously reported in dogs undergoing palliative radiation therapy with megavoltage or cobalt radiation sources and conventional intravenous carboplatin chemotherapy. The use of orthovoltage palliative radiation therapy may be a reasonable alternative to megavoltage radiation in locations where access is limited.

Keywords: radiotherapy, veterinary oncology, chemotherapy, osteosarcoma

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16136 Hospice-Shared Care for a Child Patient Supported with Extracorporeal Membrane Oxygenation

Authors: Hsiao-Lin Fang

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Every life is precious, and comprehensive care should be provided to individuals who are in the final stages of their lives. Hospice-shared care aims to provide optimal symptom control and palliative care to terminal (cancer) patients through the implementation of shared care, and to support patients and their families in making various physical and psychological adjustments in the face of death. This report examines a 10-year-boy diagnosed with Out-of-Hospital Cardiac Arrest (OHCA). The individual fainted when swimming at school and underwent 31 minutes of cardiopulmonary resuscitation (CPR). While receiving treatment at the hospital, the individual received extracorporeal membrane oxygenation(ECMO) due to unstable hemodynamics. Urgent cardiac catheterization found: Suspect acute fulminant myocarditis or underlying cardiomyopathy with acute decompensation, After the active rescue by the medical team, hemodynamics still showed only mean pressure value. With respect to the patient, interdepartmental hospice-shared care was implemented and a do-not-resuscitate (DNR) order was signed after family discussions were conducted. Assistance and instructions were provided as part of the comfort care process. A farewell gathering attended by the patient’s relatives, friends, teachers, and classmates was organized in an intensive care unit (ICU) in order to look back on the patient’s life and the beautiful memories that were created, as well as to alleviate the sorrow felt by family members, including the patient’s father and sister. For example, the patient was presented with drawings and accompanied to a garden to pick flowers. In this manner, the patient was able to say goodbye before death. Finally, the patient’s grandmother and father participated in the clinical hospice care and post-mortem care processes. A hospice-shared care clinician conducted regular follow-ups and provided care to the family of the deceased, supporting family members through the sorrowful period. Birth, old age, sickness, and death are the natural phases of human life. In recent years, growing attention has been paid to human-centered hospice care. Hospice care is individual holistic care provided by a professional team and it involves the provision of comprehensive care to a terminal patient. Hospice care aims to satisfy the physical, psychological, mental, and social needs of patients and their families. It does not involve the cessation of treatment but rather avoids the exacerbation or extension of the suffering endured by patients, thereby preserving the dignity and quality of life during the end-of-life period. Patients enjoy the company of others as they complete the last phase of their lives, and their families also receive guidance on how they can move on with their own lives after the patient’s death.

Keywords: hospice-shared care, extracorporeal membrane oxygenation (ECMO), hospice-shared care, child patient

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16135 Therapeutic Nihilism: Challenging Aging Diseases in Cameroon

Authors: Chick Loveline Ayoh Epse Ndi

Abstract:

Our cultural stance has deep implications for the psychological and physical well-being of the old. Cameroon is still rooted on the traditional belief that stipulates that; the aged are best catered for in the family setting where the children and grandchildren are supposed to give in return for services invested on them by the former. This is why up till date, there are no “Rest Homes” or “Convalescent hospitals” despite the rising challenges faced by the aged in this context. Beside the special measure set aside to cater for the aged, such as “Rest Homes” for the healthy, “Convalescent hospitals” are created set to cater for the health of the aged in the Western context with other facilities such as geriatric units. The health care practitioners are aware of aging diseases and have trained human resources like Gerontologists to cater for the aged and aging diseases. Meanwhile, in Africa and Cameroon in particular, such infrastructural and human resources are still to be considered in the health care system. It can be assumed that the aged and aging diseases are still to be considered in the health care system in this context. This is why we talk of therapeutic nihilism, where the aged are mixed up with other categories of patients with no special attention given to them. This qualitative study carried out in the Yaounde, the capital city of Cameroon, with their best referent hospitals, reveal that; the aged and aging diseases are still a myth in this context. Data collected in both private and public health institutions show that there is only one public institution in Cameroon that has a geriatric unit with no specialists. Patients who aretreated in this unit are considered as aged with terminal diseases that need palliative care and not intensive care. Cameroon is still lacking in terms of health care to the aged and ageing diseases. Like other patients, the aged are treated with a lot of laxity and no value. There is an emergency to create special health care units for geriatrics and and train gerontologist. Mentally or physically ill aged faced medical rational with psychodynamic treatment considered as waste of time. The aged are less likely to be regarded salvageable when they enter a hospital in serious conditions due to the lack of specialists and geriatric units for them. The implication of this study is to sensitization the stake holders for an urgent need to extend special care units for the aged and aging diseases in this context.

Keywords: challeng, therapy, agtng, diseases cameroon

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16134 Adoption of Lean Thinking and Service Improvement for Care Home Service

Authors: Chuang-Chun Chiou

Abstract:

Ageing population is a global trend; therefore the need of care service has been increasing dramatically. There are three basic forms of service delivered to the elderly: institution, community, and home. Particularly, the institutional service can be seen as an extension of medical service. The nursing home or so-called care home which is equipped with professional staff and facilities can provide a variety of service including rehabilitation service, short-term care, and long term care. Similar to hospital and other health care service, care home service do need to provide quality and cost-effective service to satisfy the dwellers. The main purpose of this paper is to show how lean thinking and service innovation can be applied to care home operation. The issues and key factors of implementing lean practice are discussed.

Keywords: lean, service improvement, SERVQUAL, care home service

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16133 Production, Quality Control, and Biodistribution Studies of 141ce-Edtmp as a Potential Bone Pain Palliation Agent

Authors: Fatemeh Soltani, Simindokht Shirvani Arani, Ali Bahrami Samani, Mahdi Sadeghi, Kamal Yavari

Abstract:

Cerium-141 [T1/2 = 32.501 days, Eβ (max) = 0.580 (29.8%) and 0.435(70.2%) MeV, Eγ=145.44 (48.2%) keV] possesses radionuclidic properties suitable for use in palliative therapy of bone metastases. 141Ce also has gamma energy of 145.44 keV, which resembles that of 99mTc. Therefore, the energy window is adjustable on the Tc-99m energy because of imaging studies. 141Ce can be produced through a relatively easy route that involves thermal neutron bombardment on natural CeO2 in medium flux research reactors (4–5×1013 neutrons/cm2•s). The requirement for an enriched target does not arise. Ethylenediamine tetramethylene phosphonic acid (EDTMP) was synthesized and radiolabeled with 141Ce. Complexation parameters were optimized to achieve maximum yields (>99%). The radiochemical purity of 141Ce-EDTMP was evaluated by radio-thin layer chromatography. The stability of the prepared formulation was monitored for one week at room temperature, and results showed that the preparation was stable during this period (>99%). Biodistribution studies of the complexes carried out in wild-type rats exhibited significant bone uptake with rapid clearance from blood. The properties of produced 141Ce-EDTMP suggest applying a new efficient bone pain palliative therapeutic agent to overcome metastatic bone pains.

Keywords: bone pain palliative, cerium-141, EDTMP, radiopharmaceutical

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16132 Clinical Empathy: The Opportunity to Offer Optimal Treatment to People with Serious Illness

Authors: Leonore Robieux, Franck Zenasni, Marc Pocard, Clarisse Eveno

Abstract:

Empirical data in health psychology studies show the necessity to consider the doctor-patient communication and its positive impact on outcomes such as patients’ satisfaction, treatment adherence, physical and psychological wellbeing. In this line, the present research aims to define the role and determinants of an effective doctor–patient communication during the treatment of patients with serious illness (peritoneal carcinomatosis). We carried out a prospective longitudinal study including patients treated for peritoneal carcinomatosis of various origins. From November 2016, to date, data were collected using validated questionnaires at two times of evaluation: one month before the surgery (T0) and one month after (T1). Thus, patients reported their (a) anxiety and depression levels, (b) standardized and individualized quality of life and (c) how they perceived communication, attitude and empathy of the surgeon. 105 volunteer patients (Mean age = 58.18 years, SD = 10.24, 62.2% female) participated to the study. PC arose from rare diseases (14%), colorectal (38%), eso-gastric (24%) and ovarian (8%) cancer. Three groups are defined according to the severity of their pathology and the treatment offered to them: (1) important surgical treatment with the goal of healing (53%), (2) repeated palliative surgical treatment (17%), and (3) the patients recused for surgical treatment, only palliative approach (30%). Results are presented according to Baron and Kenny recommendations. The regressions analyses show that only depression and anxiety are sensitive to the communication and empathy of surgeon. The main results show that a good communication and high level of empathy at T0 and T1 limit depression and anxiety of the patients in T1. Results also indicate that the severity of the disease modulates this positive impact of communication: better is the communication the less are the level of depression and anxiety of the patients. This effect is higher for patients treated for the more severe disease. These results confirm that, even in the case severe disease a good communication between patient and physician remains a significant factor in promoting the well-being of patients. More specific training need to be developed to promote empathic care.

Keywords: clinical empathy, determinants, healthcare, psychological wellbeing

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16131 The Measurement of the Multi-Period Efficiency of the Turkish Health Care Sector

Authors: Erhan Berk

Abstract:

The purpose of this study is to examine the efficiency and productivity of the health care sector in Turkey based on four years of health care cross-sectional data. Efficiency measures are calculated by a nonparametric approach known as Data Envelopment Analysis (DEA). Productivity is measured by the Malmquist index. The research shows how DEA-based Malmquist productivity index can be operated to appraise the technology and productivity changes resulted in the Turkish hospitals which are located all across the country.

Keywords: data envelopment analysis, efficiency, health care, Malmquist Index

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16130 Evidence Based Practice for Oral Care in Children

Authors: T. Turan, Ç. Erdoğan

Abstract:

As far as is known, general nursing care practices do not include specific evidence-based practices related to oral care in children. This study aimed to evaluate the evidence based nursing practice for oral care in children. This article is planned as a review article by searching the literature in this field. According to all age groups and the oral care in various specific situations located evidence in the literature were examined. It has been determined that the methods and frequency used in oral care practices performed by nurses in clinics differ from one hospital to another. In addition, it is seen that different solutions are used in basic oral care, oral care practices to prevent ventilator-associated pneumonia and evidence-based practice in mucositis management in children. As a result, a standard should be established in oral care practices for children and education for children is recommended.

Keywords: evidence-based practice, oral care, nursing, children

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16129 Exploring Spiritual Needs of Taiwanese Inpatients with Advanced Cancer and Their Family Caregivers

Authors: Szu Mei Hsiao

Abstract:

This study explores the spiritual needs of inpatients with advanced cancer and their family caregivers in one southern regional teaching hospital in Taiwan and elucidates the differences and similarities of spiritual needs between them. Little research reports the different phases of spiritual needs and the potential impact of Chinese cultural values on the spiritual needs. Qualitative inquiry was used. Twenty-one patients with advanced cancer and twenty-two family caregivers were recruited. During hospitalization, all participants identified spiritual needs both the palliative phase and the dying phase: (a) the need to foster faith/confidence and hope for medicine and/or God; (b) to understand the meaning and values of life; (c) to experience more reciprocal human love and forgiveness; and (d) to obey God’s/Heaven will. Furthermore, the differences of spiritual needs between patients with advanced cancer and their family caregivers are as follows: (a) family caregivers emphasized the need to inform relatives and say goodbye in order to die peacefully; (b) patients highlighted a need to maintain a certain physical appearance in order to preserve their dignity; nurture one’s willpower; learn about the experiences of cancer survivors; and identify one’s own life experience for understanding the meaning and values of life. Moreover, the dissimilarity of spiritual needs is that the patients pointed out the need to understand God’s will during the palliative treatment phase. However, the family caregivers identified the need to forgive each other, and inform relatives and say goodbye to patients in the dying phase. This research has shown that the needs of meaning/values of life and facing death peacefully are different between two groups. Health professionals will be encouraged to detect and to develop individualized care strategies to meet spiritual needs.

Keywords: advanced cancer, Chinese culture, family caregivers, qualitative research, spiritual needs

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16128 Protective Custody in Child Protection: Reflection of Residential Care Workers in the Philippines

Authors: Hazel S. Cometa-Lamberte

Abstract:

This paper presents the residential care workers reflections in working with children who were under protective custody and placed in a residential care facility for children. Key informant interviews and focus group discussion were employed in this study to analyze the views of residential care workers on the programs and services and case management system in residential care for children. Results suggest that working in a residential care facility for children needs the interplay of both the worker’s personal and professional values, knowledge and skills in working with children. Analyzing the residential care workers experiences in handling children in residential care facilities is vital for the improvement of the policies, programs and services, the repertoire of techniques and facilitate the creation of a new social work practice framework/model in child protection specifically in residential care facilities.

Keywords: child protection, residential care, residential care workers, social workers

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16127 Nursing Care Experience for a Patient with Type2 Diabetes Mellitus and Hyperglycemic Hyperosmolar State

Authors: Yen-Hsia Lin, Ya-Fang Cheng, Hui-Zhu Chen, Chi-Hui Tiao

Abstract:

This is a case study of a 70-year-old man suffering from Type 2 diabetes mellitus and hyperglycemia hyperosmolarity state. He was admitted into the intensive care unit from the 20th to 26th of October, 2015. After receiving relevant information through open-ended conversations, observation, and physical assessment, as well as the psychological, social and spiritual holistic nursing assessment, several clinical health problems such as unstable blood sugar, impaired skin integrity and lack of self-care management knowledge were identified by the author. During the period of care, the patient was encouraged to share and express his feelings, an active listening and initiating approach from the nursing team had led to the understanding of why the patient refused to use insulin. This knowledge enabled the nursing team to manage patient care by educating the patient with self-care management skills, such as foot wound care and insulin injection skills to slow the deterioration of complications. Also, the implementation of appropriate diet and exercise routine to improve patients’ style. By enhancing self-care ability in diabetic patients, they are able to return home with the skill to improve better quality life style.

Keywords: hyperglycemia hyperosmolar state, type2 diabetes Mellitu, diabetes Mellitu foot care, intensive care

Procedia PDF Downloads 125
16126 Creation of a Care Robot Impact Assessment

Authors: Eduard Fosch-Villaronga

Abstract:

This paper pioneers Care Robot Impact Assessment (CRIA), a methodology used to identify, analyze, mitigate and eliminate the risks posed by the insertion of non-medical personal care robots (PCR) in medical care facilities. Its precedent instruments (Privacy and Surveillance Impact Assessment (PIA and SIA)) fall behind in coping with robots. Indeed, personal care robots change dramatically how care is delivered. The paper presents a specific risk-sector methodology, identifies which robots are under its scope and presents some of the challenges introduced by these robots.

Keywords: ethics, impact assessment, law, personal care robots

Procedia PDF Downloads 546
16125 The Design of a Smartbrush Oral Health Installation for Aged Care Centres in Australia

Authors: Lukasz Grzegorz Broda, Taiwo Oseni, Andrew Stranieri, Rodrigo Marino, Ronelle Welton, Mark Yates

Abstract:

The oral health of residents in aged care centres in Australia is poor, contributing to infections, hospital admissions, and increased suffering. Although the use of electric toothbrushes has been deployed in many centres, smartbrushes that record and transmit information about brushing patterns and duration are not routinely deployed. Yet, the use of smartbrushes for aged care residents promises better oral care. Thus, a study aimed at investigating the appropriateness and suitability of a smartbrush for aged care residents is currently underway. Due to the peculiarity of the aged care setting, the incorporation of smartbrushes into residents’ care does require careful planning and design considerations. This paper describes an initial design process undertaken through the use of an actor to understand the important elements to be incorporated whilst installing a smartbrush for use in aged care settings. The design covers the configuration settings of the brush and app, including ergonomic factors related to brush and smartphone placement. A design science approach led to an installation re-design and a revised protocol for the planned study, the ultimate aim being to design installations to enhance perceived usefulness, ease of use, and attitudes towards the incorporation of smartbrushes for improving oral health care for aged care residents.

Keywords: smartbrush, applied computing, life and medical sciences, health informatics

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16124 Evaluating the Effectiveness of Combined Psychiatric and Psychotherapeutic Care versus Psychotherapy Alone in the Treatment of Depression and Anxiety in Cancer Patients

Authors: Nathen A. Spitz, Dennis Martin Kivlighan III, Arwa Aburizik

Abstract:

Background and Purpose: Presently, there is a paucity of naturalistic studies that directly compare the effectiveness of psychotherapy versus concurrent psychotherapy and psychiatric care for the treatment of depression and anxiety in cancer patients. Informed by previous clinical trials examining the efficacy of concurrent approaches, this study sought to test the hypothesis that a combined approach would result in the greatest reduction of depression and anxiety symptoms. Methods: Data for this study consisted of 433 adult cancer patients, with 252 receiving only psychotherapy and 181 receiving concurrent psychotherapy and psychiatric care at the University of Iowa Hospitals and Clinics. Longitudinal PHQ9 and GAD7 data were analyzed between both groups using latent growth curve analyses. Results: After controlling for treatment length and provider effects, results indicated that concurrent care was more effective than psychotherapy alone for depressive symptoms (γ₁₂ = -0.12, p = .037). Specifically, the simple slope for concurrent care was -0.25 (p = .022), and the simple slope for psychotherapy alone was -0.13 (p = .006), suggesting that patients receiving concurrent care experienced a greater reduction in depressive symptoms compared to patients receiving psychotherapy alone. In contrast, there were no significant differences between psychotherapy alone and concurrent psychotherapy and psychiatric care in the reduction of anxious symptoms. Conclusions: Overall, as both psychotherapy and psychiatric care may address unique aspects of mental health conditions, in addition to potentially providing synergetic support to each other, a combinatorial approach to mental healthcare for cancer patients may improve outcomes.

Keywords: psychiatry, psychology, psycho-oncology, combined care, psychotherapy, behavioral psychology

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16123 Availability and Utilization of Health Care Facilities in Jalpaiguri Town

Authors: Sharmistha Mukherjee

Abstract:

Health care is the basic requirement for all. The prime question is who gets what, where and how? The unequal distribution of basic facilities do have a adverse effect on the users. The paper tries to examine health care in terms of available facilities, the health care need and how people perceive to it in a small town of Jalpaiguri in the midst of tea gardens in North Bengal. The morbidity pattern is also minutely observed with a section describing the organizational structure of health care keeping in mind the utilization.

Keywords: availability, distribution, health care, utilization

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16122 Knowledge about Dementia: Why Should Family Caregivers Know that Dementia is a Terminal Disease?

Authors: Elzbieta Sikorska-Simmons

Abstract:

Dementia is a progressive terminal disease. Despite this recognition, research shows that most family caregivers do not know it, and it is unclear how this knowledge affects the quality of patient care. The aim of this qualitative study of 20 family caregivers for patients with advanced dementia is to examine how the caregiver's knowledge about dementia affects the quality of patient care in the context of healthcare decision-making, advanced care planning, and access to adequate support systems. Knowledge about dementia implies family caregivers' understanding of dementia trajectories, common symptoms/complications, and alternative treatment options (e.g., comfort feeding versus tube feeding). Data were collected in semi-structured interviews with 20 family caregivers. The interviews were conducted in person by the author and designed to elicit rich descriptions of family caregivers' experiences with healthcare decision-making and the management of common symptoms/complications of end-stage dementia as patient healthcare proxies. The study findings suggest that caregivers who recognize that dementia is a terminal disease are less likely to opt for life-extending treatments during the advanced stages. They are also more likely to seek palliative/hospice care, and consequently, they are better able to avoid unnecessary hospitalizations or medical procedures. For example, those who know that dementia is a terminal disease tend to opt for "comfort feeding" rather than "tube feeding" in managing the swallowing difficulties that accompany advanced dementia. In the context of advance care planning, family caregivers who know that dementia is a terminal disease tend to have more meaningful advance directives (e.g., Power of Attorney and Do Not Resuscitate orders). They are better prepared to anticipate common problems and pursue treatments that foster the best quality of patient life and care. Greater knowledge about advanced dementia helps them make more informed decisions that focus on enhancing the quality of patient life rather than just survival. In addition, those who know that dementia is a terminal disease are more likely to establish adequate support systems to help them cope with the complex demands of caregiving. For example, they are more likely to seek dementia-oriented primary care programs that offer house visits or respite services. Based on the study findings, knowledge about dementia as a terminal disease is critical in the optimal management of patient care needs and the establishment of adequate support systems. More research is needed to better understand what caregivers need to know to better prepare them for the complex demands of dementia caregiving.

Keywords: dementia education, family caregiver, management of dementia, quality of care

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16121 The Concerns and Recommendations of Informal and Professional Caregivers for COVID-19 Policy for Homecare and Long-Term Care For People with Dementia: A Qualitative Study

Authors: Hanneke J. A. Smaling, Mandy Visser

Abstract:

One way to reduce the risk of COVID-19 infection is by preventing close interpersonal contact with distancing measures. These social distancing measures presented challenges to the health and wellbeing of people with dementia and their informal and professional caregivers. This study describes the concerns and recommendations of informal and professional caregivers for COVID-19 policy for home care and long-term care for people with dementia during the first and second COVID-19 wave in the Netherlands. In this qualitative interview study, 20 informal caregivers and 20 professional caregivers from home care services and long-term care participated. Interviews were analyzed using an inductive thematic analysis approach. Both informal and professional caregivers worried about getting infected or infecting others with COVID-19, the consequences of the distancing measures, and quality of care. There was a general agreement that policy in the second wave was better informed compared to the first wave. At an organizational level, the policy was remarkably flexible. Recommendations were given for dementia care (need to offer meaningful activities, improve the organization of care, more support for informal caregivers), policy (national vs. locally organization, social isolation measures, visitor policy), and communication. Our study contributes to the foundation of future care decisions by (inter)national policymakers, politicians, and healthcare organizations during the course of the COVID-19 pandemic, underlining the need for balance between safety and autonomy for people with dementia.

Keywords: covid-19, dementia, home care, long-term care, policy

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