Search results for: home based palliative care

Authors: Aritra Das, Tanmay Mahapatra, Prabir Maharana, Sridhar Srikantiah

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In the absence of adequate well-equipped neonatal-care facilities serving rural Bihar, India, the practice of essential home-based newborn-care remains critically important for reduction of neonatal and infant mortality, especially among pre-term and small-for-gestational-age (Low-birth-weight) newborns. To improve the child health parameters in Bihar, ‘Very-Low-Birth-Weight (vLBW) Tracking’ intervention is being conducted by CARE India, since 2015, targeting public facility-delivered newborns weighing ≤2000g at birth, to improve their identification and provision of immediate post-natal care. To assess the effectiveness of the intervention, 200 public health facilities were randomly selected from all functional public-sector delivery points in Bihar and various outcomes were tracked among the neonates born there. Thus far, one pre-intervention (Feb-Apr’2015-born neonates) and three post-intervention (for Sep-Oct’2015, Sep-Oct’2016 and Sep-Oct’2017-born children) follow-up studies were conducted. In each round, interviews were conducted with the mothers/caregivers of successfully-tracked children to understand outcome, service-coverage and care-seeking during the neonatal period. Data from 171 matched facilities common across all rounds were analyzed using SAS-9.4. Identification of neonates with birth-weight ≤ 2000g improved from 2% at baseline to 3.3%-4% during post-intervention. All indicators pertaining to post-natal home-visits by frontline-workers (FLWs) improved. Significant improvements between baseline and post-intervention rounds were also noted regarding mothers being informed about ‘weak’ child – at the facility (R1 = 25 to R4 = 50%) and at home by FLW (R1 = 19%, to R4 = 30%). Practice of ‘Kangaroo-Mother-Care (KMC)’– an important component of essential newborn care – showed significant improvement in postintervention period compared to baseline in both facility (R1 = 15% to R4 = 31%) and home (R1 = 10% to R4=29%). Increasing trend was noted regarding detection and birth weight-recording of the extremely low-birth-weight newborns (< 1500 g) showed an increasing trend. Moreover, there was a downward trend in mortality across rounds, in each birth-weight strata (< 1500g, 1500-1799g and >= 1800g). After adjustment for the differential distribution of birth-weights, mortality was found to decline significantly from R1 (22.11%) to R4 (11.87%). Significantly declining trend was also observed for both early and late neonatal mortality and morbidities. Multiple regression analysis identified - birth during immediate post-intervention phase as well as that during the maintenance phase, birth weight > 1500g, children of low-parity mothers, receiving visit from FLW in the first week and/or receiving advice on extra care from FLW as predictors of survival during neonatal period among vLBW newborns. vLBW tracking was found to be a successful and sustainable intervention and has already been handed over to the Government.

Keywords: weak newborn tracking, very low birth weight babies, newborn care, community response

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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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Authors: Po-Ching Chou, Wen-Chen Liang, I. Chen Chen, Jong-Hau Hsu, Yuh-Jyh Jong

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Background：Cardiopulmonary complications seem to cause high morbidity and mortality in patients with neuromuscular diseases (NMD) but so far there is no domestic data reported in Taiwan. We, therefore attempted to analyze the factors to cause the death in NMD patients from our cohort. Methods：From 1998 to 2013, we retrospectively collected the information of the NMD patients treated and followed up in Kaohsiung Medical University Hospital. Forty-two patients with NMD who expired during these fifteen years were enrolled. The medical records of these patients were reviewed and the causes of death and the associated affecting factors were analyzed. Results：Eighteen patients with NMD (mean age=13.3, SD=12.4) with complete medical record and detailed information were finally included in this study, including spinal muscular atrophy (SMA) (n=9, 7/9: type 1), Duchenne muscular dystrophy (n=6), congenital muscular dystrophy (n=1), carnitine acyl-carnitine translocase (CACT) deficiency (n=1) and spinal muscular atrophy with respiratory distress (SMARD)(n=1). The place of death was in ICU (n=11, 61%), emergency room (n=3, 16.6%) or home (n=4, 22.2%). For SMA type 1 patients, most of them (71.4%, 5/7) died in emergency room or home and the other two expired during an ICU admission. The causes of death included acute respiratory failure due to pneumonia (n=13, 72.2 %), ventilator failure or dislocation (n=2, 11.1%), suffocation/choking (n=2, 11.1%), and heart failure with hypertrophic cardiomyopathy (n=1, 5.55%). Among the 15 patients died of respiratory failure or choking, 73.3% of the patients (n=11) received no ventilator care at home. 80% of the patients (n=12) received no cough assist at home. The patient died of cardiomyopathy received no medications for heart failure until the last admission. Conclusion: Respiratory failure and choking are the leading causes of death in NMD patients. Appropriate respiratory support and airway clearance play the critical role to reduce the mortality.

Keywords: neuromuscular disease, cause of death, tertiary care hospital, medical sciences

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Authors: E. M. Mhlongo, E. Lutge

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In 2010, South Africa’s National Department of Health (NDoH) launched national primary health care (PHC) initiative to strengthen health promotion, disease prevention, and early disease detection. The strategy, called Re-engineering Primary Health Care (rPHC), aims to support a preventive and health-promoting community-based PHC model by using community-based outreach teams (known in South Africa as Ward-based Primary Health Care Outreach teams or WBPHCOTs). These teams provide health education, promote healthy behaviors, assess community health needs, manage minor health problems, and support linkages to health services and health facilities. Ward based primary health care outreach teams are supervised by a professional nurse who is the outreach team leader. In South Africa, the WBPHCOTs have been established, registered, and are reporting their activities in the District Health Information System (DHIS). This study explored and described the challenges faced by outreach team leaders in supporting and supervising the WBPHCOTs. Qualitative data were obtained through interviews conducted with the outreach team leaders at a sub-district level. Thematic analysis of data was done. Findings revealed some challenges faced by team leaders in day to day execution of their duties. Issues such as staff shortages, inadequate resources to carry out health promotion activities, and lack of co-operation from team members may undermine the capacity of team leaders to support and supervise the WBPHCOTs. Many community members are under the impression that the outreach team is responsible for bringing the clinic to the community while the outreach teams do not carry any medication/treatment with them when doing home visits. The study further highlights issues around the challenges of WBPHCOTs at a household level. In conclusion, the WBPHCOTs are an important component of National Health Insurance (NHI), and in order for NHI to be optimally implemented, the issues raised in this research should be addressed with some urgency.

Keywords: community health worker, national health insurance, primary health care, ward-based primary health care outreach teams

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Authors: Ashan Wijekoon, Abi Beane, Subashini Jayawardana

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Background: Soldiers' physical rehabilitation and long term health status has been hindered due to limited investment in and access to rehabilitation services. Home-based rehabilitation programmes could offer a potentially feasible alternative to facilitate long-term recovery. Objectives: To explore Sri Lankan soldiers' perceptions of barriers and facilitators to a home-based physical rehabilitation programme.Methods and Materials: We conducted qualitative semi-structured interviews with community re-integrated army veterans who had undergone unilateral lower limb amputation following war related trauma. Veterans were identified from five districts of Sri Lanka, based on a priori knowledge of veteran community settlements (Disabled Category Registry) obtained from Directorate of Rehabilitation, MoD, Sri Lanka. Individuals were stratified for purposive selection. The interview guide was developed from existing methods and adapted for context. Verbatim transcripts of interviews were analyzed for emerging themes using an inductive approach. Following consent, participants met the researcher (AW- a trained physiotherapist fluent in Sinhalese). Results: Twenty-five Interviews were conducted, totaling 7.2 hours of new data (Mean±SD: 0.28±0.11). All participants were male, aged 30-55 years (Mean±SD: 46.1±7.4), and had experienced traumatic amputation as a result of conflict. Twenty-four sub themes were identified. Inadequate space for exercises, absence of equipment and assistance to conduct the exercises at home, alongside absence of community healthcare services were all barriers. Burden of comorbidities, including chronic pain and disability level, were also barriers. Social support systems, including soldier societies, family, and kinship with other amputees, were seen as facilitators to an at-home programme. Motivation for independence was a strong indicator of engagement. Conclusion: Environment, chronic pain, and absence of well-established community health services were key barriers. Family and soldier support was a facilitator. Engagement with community healthcare providers (physiotherapist and primary care physicians) will be essential to the success of an at-home rehabilitation program.

Keywords: physical rehabilitation, home-based, soldiers, disability, lower-limb amputation, qualitative

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Authors: Alexander Street, Nina Wollersberger, Paul Fernie, Leonardo Muller, Ming Hung HSU, Helen Odell-Miller, Jorg Fachner, Patrizia Di Campli San Vito, Stephen Brewster, Hari Shaji, Satvik Venkatesh, Paolo Itaborai, Nicolas Farina, Alexis Kirke, Sube Banerjee, Eduardo Reck Miranda

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Escalating neuropsychiatric symptoms (NPS) in people with dementia may lead to earlier care home admission. Music listening has been reported to stimulate cognitive function, potentially reducing agitation in this population. We present a scoping review, reporting on current developments and discussing the potential for music listening with related technology in managing agitation in dementia care. Of two searches for music listening studies, one focused on older people or people living with dementia where music listening interventions, including technology, were delivered in participants’ homes or in institutions to address neuropsychiatric symptoms, quality of life and independence. The second included any population focusing on the use of music technology for health and wellbeing. In search one 70/251 full texts were included. The majority reported either statistical significance (6, 8.5%), significance (17, 24.2%) or improvements (26, 37.1%). Agitation was specifically reported in 36 (51.4%). The second search included 51/99 full texts, reporting improvement (28, 54.9%), significance (11, 21.5%), statistical significance (1, 1.9%) and no difference compared to the control (6, 11.7%). The majority in the first focused on mood and agitation, and the second on mood and psychophysiological responses. Five studies used AI or machine learning systems to select music, all involving healthy controls and reporting benefits. Most studies in both reviews were not conducted in a home environment (review 1 = 12; 17.1%; review 2 = 11; 21.5%). Preferred music listening may help manage NPS in the care home settings. Based on these and other data extracted in the review, a reasonable progression would be to co-design and test music listening systems and protocols for NPS in all settings, including people’s homes. Machine learning and automated technology for music selection and arousal adjustment, driven by live biodata, have not been explored in dementia care. Such approaches may help deliver the right music at the appropriate time in the required dosage, reducing the use of medication and improving quality of life.

Keywords: music listening, dementia, agitation, scoping review, technology

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Authors: Jennifer Wheeldon, Nick de Viggiani, Nikki Cotterill

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Background: Urinary and fecal incontinence affect a significant proportion of older adults aged 65 and over who permanently reside in residential and nursing home facilities. Incontinence symptoms have been linked to comorbidities, an increased risk of infection and reduced quality of life and mental wellbeing of residents. However, continence care provision can often be poor, further compromising the health and wellbeing of this vulnerable population. Objectives: To identify experiences and perceptions of continence care provision in older adult residential care settings and to identify factors that help or hinder good continence care provision. Settings included both residential care homes and nursing homes for older adults. Methods: A qualitative evidence synthesis using systematic review methodology established the current evidence-base. Data from 20 qualitative and mixed-method studies was appraised and synthesized. Following the review process, 10* qualitative interviews with staff working in older adult residential care settings were conducted across six* sites, which included registered managers, registered nurses and nursing/care assistants/aides. Purposive sampling recruited individuals from across England. Both evidence synthesis and interview data was analyzed thematically, both manually and with NVivo software. Results: The evidence synthesis revealed complex barriers and facilitators for continence care provision at three influencing levels: macro (structural and societal external influences), meso (organizational and institutional influences) and micro (day-to-day actions of individuals impacting service delivery). Macro-level barriers included negative stigmas relating to incontinence, aging and working in the older adult social care sector, restriction of continence care resources such as containment products (i.e. pads), short staffing in care facilities, shortfalls in the professional education and training of care home staff and the complex health and social care needs of older adult residents. Meso-level barriers included task-centered organizational cultures, ageist institutional perspectives regarding old age and incontinence symptoms, inadequate care home management and poor communication and teamwork among care staff. Micro-level barriers included poor knowledge and negative attitudes of care home staff and residents regarding incontinence symptoms and symptom management and treatment. Facilitators at the micro-level included proactive and inclusive leadership skills of individuals in management roles. Conclusions: The findings of the evidence synthesis study help to outline the complexities of continence care provision in older adult care homes facilities. Macro, meso and micro level influences demonstrate problematic and interrelated barriers across international contexts, indicating that improving continence care in this setting is extremely challenging due to the multiple levels at which care provision and services are impacted. Both international and national older adult social care policy-makers, researchers and service providers must recognize this complexity, and any intervention seeking to improve continence care in older adult care home settings must be planned accordingly and appreciatively of the complex and interrelated influences. It is anticipated that the findings of the qualitative interviews will shed further light on the national context of continence care provision specific to England; data collection is ongoing*. * Sample size is envisaged to be between 20-30 participants from multiple sites by Spring 2023.

Keywords: continence care, residential and nursing homes, evidence synthesis, qualitative

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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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Authors: Mohammad Ansari, Ahmed Ismail, Satinder Mann

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Overcrowding in Emergency departments (ED) of United Kingdom has become a common problem. Urgent Care centres were developed nearly a decade ago to reduce pressure on EDs. Unfortunately, the development of Urgent Care centres has failed to produce the projected effects. It was thought that nearly 40% patients attending ED would go to Urgent Care centres and these would be staffed by Primary care Physicians. Data reveals that no more than 20% patients were seen by Primary Care Physicians even when the Urgent Care Centre was based in the ED. This study was carried out at the ED of George Eliot Hospital, Nuneaton, UK where the Urgent Care centre was based in the ED and employed Primary Care Physicians with special interest in trauma for nearly one year. This was then followed by a Primary Care Physician and Advanced Nurse Practitioner. We compared the number of patients seen during these periods and the cost-effectiveness of the service.We randomly selected a week of patients seen by Primary Care Physicians with special interest in Trauma and by Primary Care Physicians and the Advanced Nurse Practitioner. We compared the number and type of patients seen during these two periods. Nearly 38% patients were seen by Primary care Physician with special interest in Trauma, whilst only 14.3% patients were seen by the Primary care Physician and Advanced Nurse Practitioner. The Primary Care Physicians with special interest in trauma were paid less. Our study confirmed that unless Primary Care Physicians are able to treat minor trauma and interpret x-rays, the urgent care service is not going to be cost effective. Numerous previous studies have shown that 15 to 20% patients attending ED can be treated by Primary Care Physicians who do not require any investigations for their management. It is advantageous to have Urgent Care Centres within the ED because if the patient deteriorates they can be transferred to ED. We recommend that the Urgent care Centres should be a part of ED. Our study shows that Urgent care Centres in the ED can be helpful and cost effective if staffed by either senior Emergency Physicians or Primary Care Physicians with special interest and experience in the management of minor trauma.

Keywords: urgent care centres, primary care physician, advanced nurse practitioner, trauma

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Authors: Ibrahim Uba Yusuf

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Conflict is a subject or, better put, theme that primarily dominates Hausa home videos. Conflict in Hausa home videos is one of the sources of attraction to viewers, but do such films achieve anything? The Hausa home video industry in Northern Nigeria, popularly called Kannywood has been making attempts by producing cultural products for consumption within and outside the country. The ability of the industry to connect issues of concern within the region is an effort to reckon with. This paper, therefore, examines how Hausa home videos on peacebuilding can serve as a template for peacebuilding. This is coming at a time when global attention to peacebuilding is increasing. The inclusion of peacebuilding as SDG Goal suggests the need for utilizing other approaches that can enhance peace in risk societies like Nigeria. The paper based its arguments using the key proponents of the auteur theory—the director’s bias, thoughts, and sense of reasoning shape the issues emphasized in the home videos. The paper argues that Hausa home video industry is one medium amongst the many producing discourse about peacebuilding, conflict, and justice, social cohesion, education, and understanding, as well as raising social consciousness on issues of public concern. It is the conclusion of the paper that Hausa home videos produced on sustaining peacebuilding in Northern Nigeria are cultural products that have become lenses to understanding the interplay between representations or portrayal of conflict and peaceful resolutions of the conflicting issues.

Keywords: hausa home videos, peacebuilding, conflict, northern Nigeria

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Authors: Tonya P. Bowers

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Background: The community/patient-focused quality improvement (QI) project has resolved a clinical problem using a quantitative design evaluating behavior change practices in a convenience sample from a multi-cultural congregation in a faith-based setting. AD is a legal document that speaks for the patient when they are unable to speak for themselves. The AD provides detailed information regarding critical medical decisions on behalf of the patient if they’re unable to make decisions themselves. The goal of an AD is to improve EOL care renderings that align with the patient’s desires. The AD diminishes anxiety and stress associated with making difficult EOL care decisions for patients and their families. Method: The project has two intervention strategies: pre-intervention and post-intervention formative surveys and a final summative survey. Most of the data collection takes place during implementation. The Let’s Talk About It Program utilized an online meeting platform for presentation. Participants were asked to complete informed consent and surveys via an online portal. Education included slide presentation, Advance Directive demonstration, video clips, discussions and 1:1 assistance with AD completion with a project manager. Results: Considering the overwhelming likelihood responses where 87.5% identified they “definitely would” hold an End-Of-Life conversation with their healthcare provider or family, and 81.25% indicated their likelihood that they “definitely would” complete an advance directive. In addition, the final summative post-intervention survey (n-14) also demonstrated an overwhelming 93% positive response. Which undoubtedly demonstrates favorable outcomes for the project. Conclusion: the Let’s Talk About It Program demonstrated effectiveness in improving participants' attitudes and acceptance towards Advance Directives and expanding End-of-Life care discussions. Emphasis on program sustainment within the church is imperative in fostering continued awareness and improved health outcomes for the local community with low health literacy.

Keywords: advance directive, end of life, advance care planning, palliative care, low health literacy, faith-based

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Authors: Haleh Dadgostar, Faramarz Akbari, Hosien Vahid Tari, Masoud Solaymani-Dodaran, Mohammad Razi

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Introduction: There are a number of exercises-protocols have been applied to improve low back pain. We compared the effect of supervised exercise therapy and home-based exercise therapy among patients with nonspecific chronic low back pain. Methods: 70 patients with nonspecific chronic low back pain were randomly (using a random number generator, excel) divided into two groups to compare the effects of two types of exercise therapy. After a common educational session to learn how to live with low back pain as well as to use core training protocols to strengthen the muscles, the subjects were randomly assigned to follow supervised exercise therapy (n = 31) or home-based exercise therapy (n = 34) for 20 weeks. Results: Although both types of exercise programs resulted in reduced pain, this factor decreased more significantly in supervised exercise program. All scores of fitness improved significantly in supervised exercise group. But only knee extensor strength score was increased in the home base exercise group. Conclusion: Comparing between two types of exercise, supervised group exercise showed more effective than the other one. Reduction in low back pain severity and improvement in muscle flexibility and strength can be more achieved by using a 20-week supervised exercise program compared to the home-based exercise program in patients with nonspecific chronic low back pain.

Keywords: low back pain, anthropometric parameters, supervised exercise therapy, home-based exercise therapy

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Authors: Hyunsik Park

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Objective: To provide information of charged nursing care facility for helping to establish geriatric health care policy, and to figure out which factors would be the main determinants for the choice of it. Method: 46 males and 53 females, and the same number of their caregivers admitted into the charged nursing care facility were recruited for intensive interview including personal information, disease information, and economic, familial, marital and emotional statuses. This is a cross-sectional study and we analyzed the data qualitatively. Results: Patients had 3.2 diseases and a hospitalization for 2.3 years on average. They were consists of 46 singles (46.9%), 8 unmarried (8.2%), 5 divorced (5.1%) and 32 married (32.7%). More than two third (70.1%) were supported by their eldest son or daughter. Mostly, the family caregivers decided to admit into the facilities by the doctor’s recommendation (68.4%). When they made a choice for a facility, most of them (42.9%) considered environmental and sanitary conditions. According to their expectation for management in nursing care facility, most caregivers (59.2%) wanted simple-staying for the duration, but most patients (61.3%) expected to be home after taking comprehensive rehabilitation. Three-quarter of the caregivers would agree to use nursing care facilities in the future, if they would be the same situation. Conclusion: Life style and environment are rapidly changing. In the near future, we need lots of the charged nursing care facilities for the old, thus this study can be the good reference for the preparing upcoming aged and super-aged society.

Keywords: nursing care facility, aged society, qualitative analysis, health

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Authors: Akankunda Veronicah Karuhanga

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Dementia is an age mental disorder that makes victims lose normal functionality that needs delicate attention. It has been technically defined as a clinical syndrome that presents a number of difficulties in speech and other cognitive functions that change someone’s behaviors and can also cause impairments in activities of daily living, not forgetting a range of neurological disorders that bring memory loss and cognitive impairment. Family members are the primary healthcare givers and therefore, the way how they handle the situation in its early stages determines future deterioration syndromes like total memory loss. Unfortunately, most family members are ignorant about this condition and in most cases, the patients are brought to our facilities when their condition was already mismanaged by family members and we thus cannot do much. For example, incontinence can be managed at early stages through potty training or toilet scheduling before resorting to 24/7 diapers which are also not good. Professional Elderly care should be understood and practiced as an extension of homes, not a dumping place for people considered “abnormal” on account of ignorance. Immediate relatives should therefore be sensitized concerning the normalcy of dementia in the context of old age so that they can be understanding and supportive of dementia patients rather than discriminating against them as present-day lepers. There is a need to skill home-based caregivers on how to handle dementia in its early stages. Unless this is done, many of our elderly homes shall be filled with patients who should have been treated and supported from their homes. This skilling of home-based caregivers is a vital intervention because until elderly care is appreciated as a human moral obligation, many transactional rehabilitation centers will crop up and this shall be one of the worst moral decadences of our times.

Keywords: dementia, family, Alzheimers, relevancy

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Authors: Sudeshna Sengupta

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Women’s work lives weave a complex fabric of myriad work relations and complex structures. Lives, when seen from the lens of work, is a saga of conjugated oppression by intertwined structures that are vertically and horizontally interwoven in a very complex manner. Women interact with multiple institutions through their work. The interactions and interplay of institutions shape their organization of work. They intersperse productive work with reproductive work, unpaid economic activities with unpaid care work, and all kinds of activities with leisure and self-care. The proposed paper intends to understand how women working as home-based workers in the National Capital Region (NCR) of India are organizing their everyday work, and how the organization of work is influenced by the interplay of structures. Situating itself in a multidisciplinary theoretical framework, this paper brings out how the gendering of work is playing out in the political, economic and social domain and shaping the work-life within the family, and in the paid workspace. The paper will use a primary data source, which is qualitative in nature. It will comprise 15 qualitative interviews of women home-based workers from the National Capital Region. The research uses a life history approach. The sampling was purposive using snowballing as a method. The dataset is part of the primary data (qualitative) collected for the ongoing Ph.D. work in Gender Studies at Ambedkar University Delhi. The home-based workers interviewed were in “non-factory” wage relations based on piece rates with flexible working hours. Their workplaces were their own homes with no spatial divide between living spaces and workspaces. Home-based workers were recognized as a group in the domain of labor economics in the 1980s. When menial work was cheaper than machine work, the capital owners preferred to outsource work as home-based work to women. These production spaces are fragmented and the identity of gender is created within labor processes to favor material accumulation. Both the employers and employees acknowledged the material gain of the capital owner when work was subcontracted to women at home. Simultaneously the market reinforced women’s reproductive role by conforming to patriarchal ideology. The contractors played an important role in implementing localized control on workers and also in finding workers for fragmented, gendered production processes. Their presence helped the employers in bringing together multiple forms of oppression that ranged from creating a structure to flout laws by creating shadow employers. It created an intertwined social and economic structure as well as a workspace where the line between productive and reproductive work gets blurred. The state invisibilized itself either by keeping the sector out of the domain of laws or by not implementing its own laws regulating working conditions or social security. It allowed the local hierarchy to function and define localized working conditions. The productive reproductive continuum reveals a labor control that influenced both the productive and reproductive work of women.

Keywords: informal sector, paid work, women workers, labor processes

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Authors: Elzbieta Sikorska-Simmons

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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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Authors: Laila Al-Balushi, Suad Al-Kharosui

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Due to the increasing number of breast cancer cases in Oman and the impact of the novel coronavirus disease 2019 (COVID-19 on bed situation in the hospital, a policy of early discharge (ED) with drain after breast cancer surgery was initiated at one of the tertiary hospitals in Oman. The uniqueness of this policy is no home visit follow-up, conducted after discharge and the main mode of communication was Instagram media. This policy then was evaluated by conducting a quasi-experimental study using a questionnaire with ten open and closed-ended questions, five questions to explore patient experience using a five-point Likert scale. A total of 41 female patients responded to the questionnaire. Almost 96% of the participants stated being well informed about drain care pre- and post-surgery at home. 9% of the participants developed early sign of infection and was managed at out-patient clinics. Participants with bilateral drains expressed more pain than those with single drain. 90% stated satisfied being discharged with breast drain whereas 10% preferred to stay in the hospital until the drains were removed. This study found that the policy of ED with a drain after BC surgery is practical and well-accepted by most patients. The role of breast nurse and presence of family and institutional support enhanced the success of the policy implementation. To optimize patient care, conducting a training program by breast nurse for nurses at local health centres about care management of patients with drain could improve care and enhance patient satisfaction.

Keywords: breast cancer, surgery, early discharge, surgical drain

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Authors: Ellen Dahl Gundersen, Berit Johannessen

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Introduction: Dementia and depression are common mental disorders of nursing home residents. The care of these residents consists of providing both physical, social and mental care. Too often, the physical needs are given priority, and municipal health services are urged to focus more on the patients mental and social needs. The presence of dogs may have positive impact on the mental health of nursing home residents by improving mood, social interaction and enjoyment of the visits. The voluntary organization Red Cross, has given priority to this subject by training and certifying dogs and owners (equipages), committed for regular visits at local nursing homes. Focus of this study: How do the dog owners and employees experience the presence of a dog equipage concerning the mental health of nursing home residents? Method: Individual interviews with 8-10 certified dog owners who are volunteers from Red Cross, contributing with regular visits at local nursing homes. Focus group interviews with 10 employees working in two different nursing homes. Preliminary results: Five to seven residents and one or two employees attended weekly dog equipage visits during a period of six months. The presence of an equipage seems to have made the residents calm and more social orientated with a lighter mood and better verbal expression. Some of the residents with dementia remembered the name of the dog from one week to another. The informants also reported positive outcome for the residents by their opportunity to give and get close through physical contact with a dog. Further, the presence of an equipage affected the atmosphere at the nursing home positively by promoting joy and initiating conversations about dogs. A conscious approach by the dog owners towards the residents seems to be of significance to this matter. The positive attitude and support from employees also seem to be of crucial importance for the maintenance of these visits. Conclusion: The presence of trained dog equipages in nursing homes seems to have had an overall positive impact on the mental health of residents. A conscious approach from the dog owners as well as positive support from employees seems to have a crucial impact on the success and maintenance of the visits. These findings correspond well to former research and can thereby give implications for more extended use of dogs as a mental health promoting initiative towards geriatric consumers of municipal health care services. Further research through larger studies is needed.

Keywords: animal assisted intervention, geriatric mental health, nursing home, resident

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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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Authors: Ahlam Elkilani, Bayan Elsheikh Ali, Rasha Abu Romman, Amjed Al-mousa, Belal Sababha

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The amount of energy the world uses doubles every 20 years. Green homes play an important role in reducing the residential energy demand. This paper presents a platform that is intended to learn the behavior of home residents and build a profile about their habits and actions. The proposed resident aware home controller intervenes in the operation of home appliances in order to save energy without compromising the convenience of the residents. The presented platform can be used to simulate the actions and movements happening inside a home. The paper includes several optimization techniques that are meant to save energy in the home. In addition, several test scenarios are presented that show how the controller works. Moreover, this paper shows the computed actual savings when each of the presented techniques is implemented in a typical home. The test scenarios have validated that the techniques developed are capable of effectively saving energy at homes.

Keywords: green home, resident aware, resident profile, activity learning, machine learning

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Authors: N. M. Tawil, A. R. Musa, A. I Che-Ani, H. Basri

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It is known that rising of house prices recently has affected the home ownership, especially for the future. Hence to overcome the rose of housing prices, the self-build home or DIY concept is perceived as one of the solution. This concept is proposed to be implemented for the future housing design as a strategy in helping the government to provide affordable housing, especially for middle income group to own a landed housing property. This concept is expected to offer a lower housing price for middle-income buyers and provide an opportunity for buyers to design their dream’s home with the self-build home or 'Do It Yourself' (DIY) concept. In order to implement this concept as affordable housing for MIG, the public perceptions and acceptances on the self-build home/ DIY concept itself should be identified. To achieve this aim this study was conducted by using 2 method namely literature review and questionnaire survey. The questionnaire survey was distributed to 200 respondents randomly in Lembah Klang and were analysed through the SPSS program. The results show that respondents are very interested in buying a home that they can have with the appropriate size of the home. Average of them known about Do It Yourself (DIY) concept but none of respondent have implement this concept. Most of respondents were agreed that this DIY method suitable to be implemented in the housing industry in Malaysia and they were agreed that this concept can offer a cheaper housing price because the construction costs were reduced. Moreover by providing a basic home the owner can renovate their home according to their need and financial capability.

Keywords: affordable housing, Do It Yourself, self-Built home, perception, middle income group

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Authors: Kristin Prentice, Carri Hand

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As the Canadian population ages and chronic health conditions continue to escalate, older adults will require various types of housing, such as long term care or retirement homes. Moving to a new home may require a change in leisure activities and social networks, which could be challenging to maintain identity and create a sense of home. Leisure has been known to help older adults maintain or increase their quality of life and life satisfaction and may help older adults in moving to new homes. Sense of home and identity within older adults' transitions to new homes are concepts that may also relate to leisure engagement. Literature is scant regarding the role of leisure in older adults moving to new homes and how the sense of home and identity inter-relate. This study aims to explore how leisure may play a role in older adults' transitioning to new homes, including how sense of home and identity inter-relate. An ethnographic approach will be used to understand the culture of older adults transitioning to new homes. This study will involve older adults who have recently relocated to a mid-sized city in Ontario, Canada. The study will focus on the older adult’s interactions with and connections to their home environment through leisure. Data collection will take place via video-conferencing and will include a narrative interview and two other interviews to discuss an activity diary of leisure engagement pre and post move and mental maps to capture spaces where participants engaged in leisure. Participants will be encouraged to share photographs of leisure engagement taken inside and outside their home to help understand the social spaces the participants refer to in their activity diaries and mental maps. Older adults attempt to adjust to their new homes by maintaining their identity, developing a sense of home through creating attachment to place, and maintaining social networks, all of which have been linked to engaging in leisure. This research will provide insight into the role of leisure in this transition process and the extent that the home and community can contribute to aiding their transition to the new home. This research will contribute to existing literature on the inter-relationships of leisure, sense of home, and identity and how they relate to older adults moving to new homes. This research also has potential for influencing policy and practice for meeting the housing needs of older adults.

Keywords: leisure, older adults, transition, identity

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Authors: Germans Natuhwera, Peter Ellis, Acuda Wilson, Anne Merriman, Martha Rabwoni

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Objective: The aim of the study was to diagnose the socio-economic burden and impact of a diagnosis of cervical cancer (CC) in rural women in the context of low-resourced country Uganda, using a phenomenological enquiry. Methods: This was a multi-site phenomenological inquiry, conducted at three hospice settings; Mobile Hospice Mbarara in southwestern, Little Hospice Hoima in Western, and Hospice Africa Uganda Kampala in central Uganda. A purposive sample of women with a histologically confirmed diagnosis of CC was recruited. Data was collected using open-ended audio-recorded interviews conducted in the native languages of participants. Interviews were transcribed verbatim in English, and Braun and Clarke’s (2019) framework of thematic analysis was used. Results: 13 women with a mean age of 49.2 and age range 29-71 participated in the study. All participants were of low socioeconomic status. The majority (84.6%) had advanced disease at diagnosis. A fuller reading of transcripts produced four major themes clustered under; (1) socioeconomic characteristics of women, (2) impact of CC on women’s relationships, (3) disrupted and impaired activities of daily living (ADLs), and (4) economic disruptions. Conclusions: A diagnosis of CC introduces significant socio-economic disruptions in a woman’s and her family’s life. CC causes disability, impairs the woman and her family’s productivity hence exacerbating levels of poverty in the home. High and expensive out-of-pocket expenditure on treatment, investigations, and transport costs further compound the socio-economic burden. Decentralizing cancer care services to regional centers, scaling up screening services, subsidizing costs of cancer care services, or making cervical cancer care treatment free of charge, strengthening monitoring mechanisms in public facilities to curb the vice of healthcare workers soliciting bribes from patients, increased mass awareness campaigns about cancer, training more healthcare professionals in cancer investigation and management, and palliative care, and introducing an introductory course on gynecologic cancers into all health training institutions are recommended.

Keywords: activities of daily living, cervical cancer, out-of-pocket, expenditure, phenomenology, socioeconomic

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Authors: Renjith George, Preethy Mary Donald

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Use of internet sources to retrieve health care related information among health care professionals has increased tremendously as the accessibility to internet is made easier through smart phones and tablets. Though there are huge data available at a finger touch, it is doubtful whether all the sources providing health care information adhere to evidence based practice. The objective of this survey was to study the prevalence of use of internet sources to get health care information, to assess the mind-set towards the authenticity of health care information available via internet sources and to study the awareness about evidence based practice in health care among medical and dental students in Melaka-Manipal Medical College. The survey was proposed as there is limited number of studies reported in the literature and this is the first of its kind in Malaysia. A cross sectional survey was conducted among the medical and dental students of Melaka-Manipal Medical College. A total of 521 students including medical and dental students in their clinical years of undergraduate study participated in the survey. A questionnaire consisting of 14 questions were constructed based on data available from the published literature and focused group discussion and was pre-tested for validation. Data analysis was done using SPSS. The statistical analysis of the results of the survey proved that the use of internet resources for health care information are equally preferred over the conventional resources among health care students. Though majority of the participants verify the authenticity of information from internet sources, there was considerable percentage of candidates who feels that all the information from the internet can be utilised for clinical decision making or were not aware about the need of verification of authenticity of such information. 63.7 % of the participants rely on evidence based practice in health care for clinical decision making while 34.2 % were not aware about it. A minority of 2.1% did not agree with the concept of evidence based practice. The observations of the survey reveals the increasing use of internet resources for health care information among health care students. The results warrants the need to move towards evidence based practice in health care as all health care information available online may not be reliable. The health care person should be judicious while utilising the information from such resources for clinical decision making.

Keywords: authenticity, evidence based practice, health care information, internet

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Authors: Zdravko Trivic, John Chye Fung, Ruzica Bozovic-Stamenovic

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Within the context of rapidly ageing population in Singapore and the pressing demands on both caregivers and care providers, an integrated approach to ageing-friendly and ability-sensitive enabling environment becomes an imperative. This particularly applies to nursing home environments and their immediate surroundings, as they are becoming one of the main available options of long-term care for many senior adults who are unable to age at home. Yet, despite the considerable efforts to break the still predominant clinical approach to eldercare and to introduce more home-like design and person-centric care model, nursing homes keep being stigmatised and perceived as not so desirable environments to grow old in. The challenges are further emphasised by the associated physical, sensorial, psychological and cognitive declines that are the common consequences of ageing. Such declines have an immense impact on almost all aspects of older adults’ daily functioning, including problems with mobility and spatial orientation, difficulties in communication, withdrawal from social interaction, higher level of depression and decreased sense of independence and autonomy. However, typical nursing home designs tend to neglect the full capacities of balanced and carefully integrated multisensory stimuli as active component of care and ability building. This paper outlines part of a larger multi-disciplinary study of six nursing homes in Singapore, with overarching objectives to create new models of supportive nursing home environments that go beyond the clinical care model and encourage community integration with the nursing home settings. The paper focuses on the largely neglected aspects of sensorial comfort and multi-sensorial properties of nursing homes, including both indoor and immediate outdoor spaces (boundaries). The objective was to investigate the sensory rhythms and explore their role in nursing home users’ daily routine and therapeutic capacities. Socio-sensory rhythms were captured and analysed through a combination of on-site sensory recordings of “objective” quantitative sensory data (air temperature and humidity, sound level and luminance) using multi-function environment meter, perceived experienced data, spatial mapping, first-person observations of nursing home users’ activity patterns, and interviews. This was done in addition to employment of available assessment tools, such as Wisconsin Person Directed Care assessment tool, Dementia Quality of Life [DQoL] instrument, and Resident Environment Impact Scale [REIS], as these tools address the issues of sensorial experience insufficiently and selectively. Key findings indicate varied levels of sensory comfort, as well as diversity, intensity, and customisation of multi-sensory conditions within different nursing home spaces. Sensory stimulation is typically concentrated in communal living areas of the nursing homes or in the areas that often provide controlled or limited access, including specifically designed sensory rooms and outdoor green spaces (gardens and terraces). Opportunities for sensory stimulation are particularly limited for bed-bound senior residents and within more functional areas, such as corridors. This suggests that the capacities of nursing home designs to provide more diverse and better integrated pleasant sensory conditions as integrated “therapeutic devices” to build nursing home residents’ physical and mental abilities, encourage activity and improve wellbeing are far from exhausted.

Keywords: ageing-supportive environment, enabling design, multi-sensory assessment, nursing home environment

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Authors: Pascal Gliesche, Kathrin Seibert, Christian Kowalski, Dominik Domhoff, Max Pfingsthorn, Karin Wolf-Ostermann, Andreas Hein

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Robotic assistance in nursing care is an increasingly important area of research and development. Facing a shortage of labor and an increasing number of people in need of care, the German Nursing Care Innovation Center (Pflegeinnovationszentrum, PIZ) aims to address these challenges from the side of technology. Little is known about nurses experiences with existing robotic assistance systems. Especially nurses perspectives on starting points for the development of robotic solutions, that target recurring burdensome tasks in everyday nursing care, are of interest. This paper presents findings focusing on robotics resulting from an explanatory mixed-methods study on nurses experiences with and their expectations for innovative technologies in nursing care in stationary and ambulant care facilities and hospitals in Germany. Based on the findings, eight scenarios for robotic assistance are identified based on the real needs of practitioners. An initial system addressing a single use-case is described to show perspectives for the use of robots in nursing care.

Keywords: robotics and automation, engineering management, engineering in medicine and biology, medical services, public health-care

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Authors: Rasikha Ramanand, Priyanka Dixit

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Background: Continuum of maternal care which includes antenatal care, delivery care and postnatal care aids in averting maternal deaths. The objective of this paper is to identify the association between previous experiences of child death on Continuum of Care (CoC) of recent child. Further, the study aimed at understanding where the drop-out rate was high in the continuum. Methods: The study was based on the Nation-wide District Level Household and Facility Survey (DLHS-4) conducted during 2012-13, which provides information on antenatal care, delivery care, percentage of women who received JSY benefits, percentage of women who had any pregnancy, delivery, the place of delivery etc. The sample included women who were selected from the non-EAG states who delivered at least two children. The data were analyzed using SPSS 20.Binary Logistic regression was applied to the data in which the Continuum of Care (CoC) was the dependent variable while the independent variables were entered as the covariates. Results: A major finding of the study was the antenatal to delivery care period where the drop-out rates were high. Also, it was found that a large proportion of women did not receive any of the services along the continuum. Conclusions: This study has clearly established the relationship between previous history of child loss and continuum of maternal care.

Keywords: antenatal care, continuum of care, child loss, delivery care, India, maternal health care, postnatal care

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Authors: Manee Hasap, Mongkolchai Hasap, Tasanee Nasae

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The purpose of this study was to evaluate the primary caregivers’ knowledge and capabilities for providing quality care to be hospitalized post-hip fracture surgery elderly patients. The theoretical framework of the study was derived from the concepts of dependent care agency in Orem’s Self-Care theory, and family care provision for the elderly and chronically ill patients. 59 subjects were purposively selected. The subjects were primary caregivers of post-operated hip fracture elderly patients who had been admitted to the Orthopaedic Ward of Songklanagarind Hospital. Demographic data of the caregivers and patients were collected by non-participant observation using the evaluation and recording forms. The reliability of caregivers’ knowledge measurement (0.86) was obtained by KR-20 and that of caregivers’ capabilities for post-operative care evaluation form (0.97) obtained from 2 observers by interrater reliability. The data were analyzed using descriptive statistic, which were frequency, percentage, mean, and standard deviation. The result of this study indicated that elderly patients with post-hip fracture surgery had many pre-discharge self care limitations. Approximately, 75% of the caregivers had knowledge to respond to patient’s essential needs at a high level, while the rest (25%) had this knowledge a moderate level. For observation, 57.63% of the subjects had capabilities in care practice at a moderate level; 28.81% had capabilities in care practice at a high level, while 13.56% had at a low level. The result of this study can be used as basic information for patients and caregivers capabilities developing plan especially, providing patients’ activities, accident surveillance and complications prevention for a good life quality of elderly patients after hip surgery both hospitalization and rehabilitation at home.

Keywords: care givers’ knowledge, care givers’ capabilities, elderly hip fracture patients, patients

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Authors: Erhan Berk

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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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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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