Search results for: endotracheal care

Authors: Huang Wei-Yi

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Objective: This article explores the intensive care nursing experience of a terminal lung cancer patient who received palliative care after tracheal intubation. The patient was nearing death, and the family experienced sadness and grief as they faced the patient’s deteriorating condition and impending death. Methods: The patient was diagnosed with lung cancer in 2018 and received chemotherapy and radiation therapy with regular outpatient follow-ups. Due to brain metastasis and recent poor pain control and treatment outcomes, the patient was admitted to the intensive care unit (ICU), where the tracheal tube was removed, and palliative care was initiated. During the care period, a holistic assessment was conducted, addressing the physical, psychological, social, and spiritual aspects of care. Medical records were reviewed, interviews and family meetings were held, and a comprehensive assessment was carried out by the critical care team in collaboration with the palliative care team. The primary nursing issues identified included pain, ineffective breathing patterns, fear of death, and altered tissue perfusion. Results: Throughout the care process, the palliative care nurse, along with the family, utilized listening, caring, companionship, pain management, essential oil massage, distraction, and comfortable positioning to alleviate the patient’s pain and breathing difficulties. The use of Morphine 6mg in 0.9% N/S 50ml IV drip q6h reduced the FLACC pain score from 6 to 3. The patient’s respiratory rate improved from 28 breaths/min to 18-22 breaths/min, and sleep duration increased from 4 to 7 uninterrupted hours. The holistic palliative care approach, coupled with the involvement of the palliative care team, facilitated expressions of gratitude, apologies, and love between the patient and family. Visiting hours were extended, and with the nurse’s assistance, these moments were recorded and shared with the patient’s consent, providing cherished memories for the family. The patient’s end-of-life experience was thus improved, and the family was able to find peace. This case also served to promote the concept of palliative care, ensuring that more patients and families receive high-quality nursing care. Conclusion: When caring for terminal patients, collaboration with the palliative care team, including social workers, clergy, psychologists, and nutritionists, is essential. Involving the family in decision-making and providing opportunities for closeness and expressions of gratitude improve personalized care and enhance the patient's quality of life. Upon transferring to the ward, the patient’s hemodynamic stability was maintained, including SBP 110-130 mmHg, respiratory rate 20-22 breaths/min, and pain score <3. The patient was later discharged and transitioned to home hospice care for ongoing support.

Keywords: intensive care, lung cancer, palliative care, ICU

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Authors: Ine Huybrechts, Anja Declercq, Emily Verté, Peter Raeymaeckers, Sibyl Anthierens

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Goal-oriented care is a concept gaining increased interest as an approach to go towards more coordinated and integrated primary care. It places patients’ personal life goals at the core of health care support, hereby shifting the focus from “what’s the matter with this patient” to “what matters to this patient.” In Flanders/Belgium, various primary care providers, health and social care organizations and governmental bodies have picked up this concept and have initiated actions to facilitate this approach. The implementation of goal-oriented care not only happens on the micro-level, but it also requires efforts on the meso- and macro-level. Within implementation research, there is a growing recognition that the context in which an intervention takes place strongly relates to its implementation outcomes. However, when investigating contextual variables, the external context and its impact on implementation processes is often overlooked. This study aims to explore how we can better identify and understand the external context and how it relates to the mechanism of change within the implementation process of goal-oriented care in Flanders/Belgium. Results can be used to support and guide initiatives to introduce innovative approaches such as goal-oriented care inside an organization or in the broader primary care landscape. We have conducted qualitative research, performing in-depth interviews with n=23 respondents who have affinity with the implementation of goal-oriented care within their professional function. This lead to in-depth insights from a wide range of actors, with meso-level and/or macro-level perspectives on the implementation of goal-oriented care. This means that we have interviewed actors that are not only involved with initiatives to implement goal-oriented care, but also actors that actively give form to the external context in which goal-oriented care is implemented. Data were collected using a semi-structured interview guide, audio recorded, and analyzed first inductively and then deductively using various theories and concepts that derive from organizational research. Our preliminary findings suggest t Our findings can contribute to further define actions needed for sustainable implementation of goal-oriented primary care. It gives insights in the dynamics between contextual variables and implementation efforts, hereby indicating towards those contextual variables that can be further shaped to facilitate the implementation of an innovation such as goal-oriented care. hat organizational theories can help understand the mechanism of change of implementation processes with a macro-level perspective. Institutional theories, contingency theories, resources dependency theories and others can expose the mechanism of change for an innovation such as goal-oriented care. Our findings can contribute to further define actions needed for sustainable implementation of goal-oriented primary care. It gives insights in the dynamics between contextual variables and implementation efforts, hereby indicating towards those contextual variables that can be further shaped to facilitate the implementation of an innovation such as goal-oriented care.

Keywords: goal-oriented care, implementation processes, organizational theories, person-centered care, implementation research

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Authors: Esra Yuksel, Dilek Duman, Levent Yeniay, Sezgin Ulukaya

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Sentinel lymph node biopsy (SLNB) is a minimal invasive technique with lower morbidity in axillary staging of breast cancer. Isosulfan blue stain is frequently used in SLNB and regarded as safe. The present case report aimed to report severe decrement in SpO2 following isosulfan blue administration, as well as skin and urine signs and inconsistency with clinical picture in a 67-year-old ,77 kg, ASA II female case that underwent SLNB under general anesthesia. Ten minutes after subcutaneous administration of 10 ml 1% isosulfan blue by the surgeons into the patient, who were hemodynamically stable, SpO2 first reduced to 87% from 99%, and then to 75% in minutes despite 100% oxygen support. Meanwhile, blood pressure and EtCO2 monitoring was unremarkable. After specifying that anesthesia device worked normally, airway pressure did not increase and the endotracheal tube has been placed accurately, the blood sample was taken from the patient for arterial gas analysis. A severe increase was thought in MetHb concentration since SpO2 persisted to be 75% although the concentration of inspired oxygen was 100%, and solution of 2500 mg ascorbic acid in 500 ml 5% Dextrose was given to the patient via intravenous route until the results of arterial blood gas were obtained. However, arterial blood gas results were as follows: pH: 7.54, PaCO2: 23.3 mmHg, PaO2: 281 mmHg, SaO2: %99, and MetHb: %2.7. Biochemical analysis revealed a blood MetHb concentration of 2%.However, since arterial blood gas parameters were good, hemodynamics of the patient was stable and methemoglobin concentration was not so high, the patient was extubated after surgery when she was relaxed, cooperated and had adequate respiration. Despite the absence of respiratory or neurological distress, SpO2 value was increased only up to 85% within 2 hours with 5 L/min oxygen support via face mask in the surgery room as the patient was extubated. At that time, the skin of particularly the upper part of her body has turned into blue, more remarkable on the face. The color of plasma of the blood taken from the patient for biochemical analysis was blue. The color of urine coming throughout the urinary catheter placed in intensive care unit was also blue. Twelve hours after 5 L/min. oxygen inhalation via a mask, the SpO2 reached to 90%. During monitoring in intensive care unit on the postoperative 1st day, facial color and urine color of the patient was still blue, SpO2 was 92%, and arterial blood gas levels were as follows: pH: 7.44, PaO2: 76.1 mmHg, PaCO2: 38.2 mmHg, SaO2: 99%, and MetHb 1%. During monitoring in clinic on the postoperative 2nd day, SpO2 was 95% without oxygen support and her facial and urine color turned into normal. The patient was discharged on the 3rd day without any problem.In conclusion, SLNB is a less invasive alternative to axillary dissection. However, false pulse oximeter reading due to pigment interference is a rare complication of this procedure. Arterial blood gas analysis should be used to confirm any fall in SpO2 reading during monitoring.

Keywords: isosulfan blue, pulse oximetry, SLNB, methemoglobinemia

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Authors: Jiazhi Zeng, Leiyu Shi, Xia Zou, Wen Chen, Li Ling

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Background: China is facing the unprecedented challenge of rapidly increasing rural-to-urban migration. Due to the household registration system, migrants are in a vulnerable state when they attempt to access to primary care services. A strong primary care system can reduce health inequities and mitigate socioeconomic disparities in healthcare utilization. Literature indicated that migrants were more reliant on the primary care system than local residents. Although the Chinese government has attached great importance to creating an efficient health system, primary care services are still underutilized. The referral system between primary care institutions and hospitals has not yet been completely established in China. The general populations often go directly to hospitals instead of primary care institutions for their primary care. Primary care institutions generally consist of community health centers (CHCs) and community health stations (CHSs) in urban areas, and township health centers (THCs) and rural health stations (THSs) in rural areas. In addition, primary care services are also provided by the outpatient department of municipal hospitals and tertiary hospitals. A better understanding of migrants’ experiences with primary care in the above-mentioned medical institutions is critical for improving the performance of primary care institutions and providing indications of the attributes that require further attention. The purpose of this pioneering study is to explore rural-to-urban migrants’ experiences in primary care, compare their primary care experiences in four types of medical institutions in Guangzhou, China, and suggest implications for targeted interventions to improve primary care for the migrants. Methods: This was a cross-sectional study conducted with 736 rural-to-urban migrants in Guangzhou, China, in 2014. A multistage sampling method was employed. A validated Chinese version of Primary Care Assessment Tool - Adult Short Version (PCAT-AS) was used to collect information on migrants’ primary care experiences. The PCAT-AS consists of 10 domains. Analysis of covariance was conducted for comparison on PCAT domain scores and total scores among migrants accessing four types of medical institutions. Multiple linear regression models were used to explore factors associated with PCAT total scores. Results: After controlling for socio-demographic characteristics, migrant characteristics, health status and health insurance status, migrants accessing primary care in tertiary hospitals had the highest PCAT total scores when compared with those accessing primary care THCs/ RHSs (25.49 vs. 24.18, P=0.007) and CHCs/ CHSs(25.49 vs. 24.24, P=0.006). There was no statistical significant difference for PCAT total scores between migrants accessing primary care in CHCs/CHSs and those in municipal hospitals (24.24 vs. 25.02, P=0.436). Factors positively associated with higher PCAT total scores also included insurance covering parts of healthcare payment (P < 0.001). Conclusions: This study highlights the need for improvement in primary care provided by primary care institutions for rural-to-urban migrants. Migrants receiving primary care from THCs, RHSs, CHSs and CHSs reported worse primary care experiences than those receiving primary care from tertiary hospitals. Relevant policies related to medical insurance should be implemented for providing affordable healthcare services for migrants accessing primary care. Further research exploring the specific reasons for poorer PCAT scores of primary care institutions users will be needed.

Keywords: China, PCAT, primary care, rural-to-urban migrants

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Authors: Jonathan Turner, Julie Doyle, Laura O’Philbin, Dympna O’Sullivan

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People living with dementia should be at the centre of decision-making regarding goals for daily living. These goals include basic activities (dressing, hygiene, and mobility), advanced activities (finances, transportation, and shopping), and meaningful activities that promote well-being (pastimes and intellectual pursuits). However, there is limited involvement of people living with dementia in the design of technology to support their goals. A project is described that is co-designing intelligent computer-based support for, and with, people affected by dementia and their carers. The technology will support self-management, empower participation in shared decision-making with carers and help people living with dementia remain healthy and independent in their homes for longer. It includes information from the patient’s care plan, which documents medications, contacts, and the patient's wishes on end-of-life care. Importantly for this work, the plan can outline activities that should be maintained or worked towards, such as exercise or social contact. The authors discuss how to integrate care goal information from such a care plan with data collected from passive sensors in the patient’s home in order to deliver individualized planning and interventions for persons with dementia. A number of scientific challenges are addressed: First, to co-design with dementia patients and their carers computerized support for shared decision-making about their care while allowing the patient to share the care plan. Second, to develop a new and open monitoring framework with which to configure sensor technologies to collect data about whether goals and actions specified for a person in their care plan are being achieved. This is developed top-down by associating care quality types and metrics elicited from the co-design activities with types of data that can be collected within the home, from passive and active sensors, and from the patient’s feedback collected through a simple co-designed interface. These activities and data will be mapped to appropriate sensors and technological infrastructure with which to collect the data. Third, the application of machine learning models to analyze data collected via the sensing devices in order to investigate whether and to what extent activities outlined via the care plan are being achieved. The models will capture longitudinal data to track disease progression over time; as the disease progresses and captured data show that activities outlined in the care plan are not being achieved, the care plan may recommend alternative activities. Disease progression may also require care changes, and a data-driven approach can capture changes in a condition more quickly and allow care plans to evolve and be updated.

Keywords: care goals, decision-making, dementia, self-care, sensors

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Authors: Jovina Concepcion Bachynski, Lenora Duhn, Idevania G. Costa, Pilar Camargo-Plazas

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Kidney failure is a life-limiting condition for which treatment, such as dialysis (hemodialysis and peritoneal dialysis), can exact a tremendously high physical and psychosocial symptom burden. Kidney failure can be severe enough to require a palliative approach to care. The term supportive care can be used in lieu of palliative care to avoid the misunderstanding that palliative care is synonymous with end-of-life or hospice care. Kidney supportive care, encompassing advance care planning, is an approach to care that improves the quality of life for people receiving dialysis through early identification and treatment of symptoms throughout the disease trajectory. Advanced care planning involves ongoing conversations about the values, goals, and preferences for future care between individuals and their healthcare teams. Kidney supportive care is underutilized and often initiated late in this population. There is evidence to indicate nurses are not providing the necessary elements of supportive kidney care. Dialysis nurses’ delay or lack of engagement in supportive care until close to the end of life may result in people dying without receiving optimal palliative care services. Using Charmaz’s constructivist grounded theory, the purpose of this doctoral study is to develop a substantive theory that explains the process of engagement in supportive care by nurses working in dialysis settings in Canada. Through initial purposeful and subsequent theoretical sampling, 23 nurses with current or recent work experience in outpatient hemodialysis, home hemodialysis, and peritoneal dialysis settings drawn from across Canada were recruited to participate in two intensive interviews using the Zoom© teleconferencing platform. Concurrent data collection and data analysis, constant comparative analysis of initial and focused codes until the attainment of theoretical saturation, and memo-writing, as well as researcher reflexivity, have been undertaken to aid the emergence of concepts, categories, and, ultimately, the constructed theory. At the time of abstract submission, data analysis is currently at the second level of coding (i.e., focused coding stage) of the research study. Preliminary categories include: (a) focusing on biomedical care; (b) multi-dimensional challenges to having the conversation; (c) connecting and setting boundaries with patients; (d) difficulty articulating kidney-supportive care; and (e) unwittingly practising kidney-supportive care. For the conference, the resulting theory will be presented. Nurses working in dialysis are well-positioned to ensure the delivery of quality kidney-supportive care. This study will help to determine the process and the factors enabling and impeding nurse engagement in supportive care in dialysis to effect change for normalizing advance care planning conversations in the clinical setting. This improved practice will have substantive beneficial implications for the many individuals living with kidney failure and their supporting loved ones.

Keywords: dialysis, kidney failure, nursing, supportive care

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Authors: Nasim Hashemi, Abbas Sheikhtaheri

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Telemedicine is the use of telecommunication and information technologies to provide health care services that would often not be consistently available in distant rural communities to people at these remote areas. Teleophthalmology is a branch of telemedicine that delivers eye care through digital medical equipment and telecommunications technology. Thus, teleophthalmology can overcome geographical barriers and improve quality, access, and affordability of eye health care services. Since teleophthalmology has been widespread applied in recent years, the aim of this study was to determine the different applications of teleophthalmology in the world. To this end, three bibliographic databases (Medline, ScienceDirect, Scopus) were comprehensively searched with these keywords: eye care, eye health care, primary eye care, diagnosis, detection, and screening of different eye diseases in conjunction with telemedicine, telehealth, teleophthalmology, e-services, and information technology. All types of papers were included in the study with no time restriction. We conducted the search strategies until 2015. Finally 70 articles were surveyed. We classified the results based on the’type of eye problems covered’ and ‘the type of telemedicine services’. Based on the review, from the ‘perspective of health care levels’, there are three level for eye health care as primary, secondary and tertiary eye care. From the ‘perspective of eye care services’, the main application of teleophthalmology in primary eye care was related to the diagnosis of different eye diseases such as diabetic retinopathy, macular edema, strabismus and aged related macular degeneration. The main application of teleophthalmology in secondary and tertiary eye care was related to the screening of eye problems i.e. diabetic retinopathy, astigmatism, glaucoma screening. Teleconsultation between health care providers and ophthalmologists and also education and training sessions for patients were other types of teleophthalmology in world. Real time, store–forward and hybrid methods were the main forms of the communication from the perspective of ‘teleophthalmology mode’ which is used based on IT infrastructure between sending and receiving centers. In aspect of specialists, early detection of serious aged-related ophthalmic disease in population, screening of eye disease processes, consultation in an emergency cases and comprehensive eye examination were the most important benefits of teleophthalmology. Cost-effectiveness of teleophthalmology projects resulted from reducing transportation and accommodation cost, access to affordable eye care services and receiving specialist opinions were also the main advantages of teleophthalmology for patients. Teleophthalmology brings valuable secondary and tertiary care to remote areas. So, applying teleophthalmology for detection, treatment and screening purposes and expanding its use in new applications such as eye surgery will be a key tool to promote public health and integrating eye care to primary health care.

Keywords: applications, telehealth, telemedicine, teleophthalmology

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Authors: D. I. Yani, S. Isaramalai, C. Kritpracha

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Adherence to health behaviors is essential to achieve successful TB treatment. This study aimed to examine the effect of a family-based DOTS support program on adherence to health behaviors in patients with pulmonary TB. Sixty TB patients and their families were selected using cluster randomization of community health centers. The subjects were assigned into a control group, who received the routine care, and an experimental group, who received both routine care and care from the family-based DOTS support program. Paired t-test and the independent t-test were applied. The total score of adherence to health behaviors in the experimental group was significantly higher after receiving care from the family-based DOTS support program than the pretest score (t = -10.34, p < .001). Suggestions were made to expand the application of this program in various contexts and to extend knowledge for nursing practices and research.

Keywords: self-care deficit nursing theory, family-based DOTS program, pulmonary tuberculosis, adherence, health behaviors

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Authors: Varsha Reddy Jayar

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Background: Our elderly family members deserve our best care. It's our responsibility to ensure they're healthy and safe. The population of India is increasing rapidly. People are literally being born in the streets, and there is a high growth on taxes and healthcare costs. Indian families are challenged with taking care of everyone. When you have elderly parents and a demanding job, it can be difficult to take care of them. You might not have enough time to care for them when you're already working or dealing with emotional difficulties. Living alone in old age can cause older individuals to face many health risks. Many seniors find living and caring for themselves challenging when they live by themselves. This study explored the factors that affect whether or not elderly people choose to live in old age homes. Methods: This study was carried out on 123 elderly people living in different old age homes in Karnataka, India. The reason for their residence at the home was explored using an interview. Results: It was found that the most common reason for living in an old age home is due to abuse from children and grandchildren; the majority reported were Daughter in law issues in the family specific to the adjustment and understanding amongst them. Conclusion: More and more elderly people in India are choosing to stay in old age homes as they get older. The government and voluntary agencies must have some sort of arrangements for institutional support.

Keywords: old age home, elderly, Aging, challenges of aging

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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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Authors: Ibragim Issabekov, Byron Crape, Lyazzat Toleubekova

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Background: Palliative care substantially improves the quality of life of terminally-ill patients. Symptom control is one of the keystones in the management of patients in palliative care settings, lowering distress as well as improving the quality of life of patients with end-stage diseases. The most common symptoms causing significant distress for patients are pain, nausea and vomiting, increased respiratory secretions and mental health issues like depression. Aims are: 1. to identify best practices in symptom management in palliative patients in accordance with internationally approved guidelines and compare aforementioned with actual practices in Kazakhstan; to evaluate the criteria for assessing symptoms in terminally-ill patients, 2. to review the availability and utilization of pharmaceutical agents for pain control, management of excessive respiratory secretions, nausea, and vomiting, and delirium and 3. to develop recommendations for the systematic approach to end-of-life symptom management in Kazakhstan. Methods: The use of qualitative research methods together with systematic literature review have been employed to provide a rigorous research process to evaluate current approaches for symptom management of palliative patients in Kazakhstan. Qualitative methods include in-depth semi-structured interviews of the healthcare professionals involved in palliative care provision. Results: Obstacles were found in appropriate provision of palliative care. Inadequate education and training to manage severe symptoms, poorly defined laws and regulations for palliative care provision, and a lack of algorithms and guidelines for care were major barriers in the effective provision of palliative care. Conclusion: Assessment of palliative care in this medium-income transitional-economy country is one of the first steps in the initiation of integration of palliative care into the existing health system. Achieving this requires identifying obstacles and resolving these issues.

Keywords: end-of-life care, middle income country, palliative care, symptom control

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Authors: Elizabeth Grier, Meg Gemmill, Mary Martin, Leora Reiter, Herman Tang, Alexandra Donaldson, Isis Lunsky, Mia Wu

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Background: Individuals with Cerebral Palsy (CP) and/or IDD face numerous physical and mental health challenges, including difficulty accessing effective palliative care. The aim of this study is to assess the knowledge and comfort of healthcare providers in providing community-based palliative care for patients with Cerebral Palsy (CP) and severe to profound Intellectual and Developmental Disabilities (IDD). Methods: This study includes a mixed methods approach obtaining both quantitative and qualitative data. Quantitative data from palliative care practitioners was obtained through an online survey assessing comfort in symptom management, grief assessment, and goals of care discussion. This survey was distributed to physicians and allied health practitioners across Canada through the College of Family Physicians of Canada Member Interest Groups for Palliative Care and for IDD. Survey results guided the development of a semi-structured interview template, which was used to conduct a focus group on the same topic. Participants were four palliative care providers (3 physicians and one spiritual care practitioner). The focus group transcript is currently undergoing thematic analysis using NVivo 12 software. Results: 57 palliative care practitioners completed the survey. 87% of participants indicated they have provided palliative care services for persons with CP and/or IDD. Findings suggest practitioners are somewhat confident in identifying specific physical symptoms (dyspnea, pressure ulcers) but less confident in identifying physical/emotional pain, addressing grief, and prognosticating life expectancy in this population. 54% of responses indicated they had little/no training on palliating those with CP or IDD, and 45% somewhat or strongly disagree members of their profession can manage symptoms for this population. Focus group analysis is underway, and results will be available at the time of the poster presentation. Conclusion: Persons with CP and IDD are more likely to experience severe health inequities when accessing palliative care. Results of this study suggest further education is needed for palliative care professionals to address the barriers and challenges in providing palliative care to this patient population.

Keywords: palliative care, symptom management, health equity, community healthcare, intellectual and developmental disabilities

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Omer Ibrahim Abdallh Omer

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Cancer patients often face complex medication regimens, leading to challenges in treatment adherence and clinical outcomes. Pharmacist-led medication therapy management (MTM) has emerged as a potential solution to optimize medication use and improve patient outcomes in oncology settings. In this prospective intervention study, we aimed to evaluate the impact of pharmacist-led MTM on treatment adherence and clinical outcomes among cancer patients. Participants were randomized to receive either pharmacist-led MTM or standard care, with assessments conducted at baseline and follow-up visits. Pharmacist interventions included medication reconciliation, adherence counseling, and personalized care plans. Our findings reveal that pharmacist-led MTM significantly improved medication adherence rates and clinical outcomes compared to standard care. Patients receiving pharmacist interventions reported higher satisfaction levels and perceived value in pharmacist involvement in their cancer care. These results underscore the critical role of pharmacists in optimizing medication therapy and enhancing patient-centered care in oncology settings. Integration of pharmacist-led MTM into routine cancer care pathways holds promise for improving treatment outcomes and quality of life for cancer patients.

Keywords: cancer, medications adherence, medication therapy management, pharmacist

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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: Yibeltal T. Bayou, Yohana S. Mashalla, Gloria Thupayagale-Tshweneagae

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Background: Maternal mortality has been shown to be lower in urban areas than in rural areas. However, disparities for the fast-growing population of urban poor who struggle as much their rural counterparts to access quality healthcare are masked by the urban averages. The aim of this paper is to report on the findings of antenatal adequacy among slum residents in Addis Ababa, Ethiopia. Methods and Materials: A quantitative and cross-sectional community-based study design was employed. A stratified two-stage cluster sampling technique was used to determine the sample and data was collected using structured questionnaire administered to 837 women aged 15-49 years. Binary logistic regression models were employed to identify predictors of adequacy of antenatal care. Results: The majority of slum residents did not have adequate antenatal care services i.e., only 50.7%, 19.3% and 10.2% of the slum resident women initiated early antenatal care, received adequate antenatal care service contents and had overall adequate antenatal care services. Pregnancy intention, educational status and place of ANC visits were important determinant factors for adequacy of ANC in the study area. Women with secondary and above educational status were 2.9 times more likely to have overall adequate care compared to those with no formal education. Similarly, women whose last pregnancy was intended and clients of private healthcare facilities were 1.8 and 2.8 times more likely to have overall adequate antenatal care compared to those whose last pregnancy was unintended and clients of public healthcare facilities respectively. Conclusion: In order to improve ANC adequacy in the study area, the policymaking, planning, and implementation processes should focus on the poor adequacy of ANC among the disadvantaged groups in particular and the slum residents in general.

Keywords: Addis Ababa, adequacy of antenatal care, slum residents, maternal mortality

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Authors: Zarish Jawad, Nikita Chugh, Karina Dadar

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Introduction: This paper aims to identify barriers indigenous women face in accessing prenatal care in Canada. It explores the differences in prenatal care received between indigenous and non-indigenous women. The objective is to look at changes or programs in Canada's healthcare system to reduce barriers to accessing safe prenatal care for indigenous women. Methods: A literature search of 12 papers was conducted using the following databases: PubMed, Medline, OVID, Google Scholar, and ScienceDirect. The studies included were written in English only, including indigenous females between the age of 19-35, and review articles were excluded. Participants in the studies examined did not have any severe underlying medical conditions for the duration of the study, and study designs included in the review are prospective cohort, cross-sectional, case report, and case-control studies. Results: Among all the barriers Indigenous women face in accessing prenatal care, the three most significant barriers Indigenous women face include a lack of culturally safe prenatal care, lack of services in the Indigenous community, proximity of prenatal facilities to Indigenous communities and costs of transportation. Discussion: The study found three significant barriers indigenous women face in accessing prenatal care in Canada; the geographical distribution of healthcare facilities, distrust between patients and healthcare professionals, and cultural sensitivity. Some of the suggested solutions include building more birthing and prenatal care facilities in rural areas for indigenous women, educating healthcare professionals on culturally sensitive healthcare, and involving indigenous people in the decision-making process to reduce distrust and power imbalances. Conclusion: The involvement of indigenous women and community leaders is important in making decisions regarding the implementation of effective healthcare and prenatal programs for indigenous women. However, further research is required to understand the effectiveness of the solutions and the barriers that make prenatal care less accessible for indigenous women in Canada.

Keywords: indigenous, maternal health, prenatal care, barriers

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Authors: L. José, S. Vieira, E. Melo, A. R. Pinheiro

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Objectives: This study aims to characterize the stroke profile and the health care provided for people with a stroke in Luanda, Angola. Methods: A prospective longitudinal study was conducted at two Health centers, from March to November 2023, enrolling stroke patients. Data was gathered using a survey created by the researchers and validated by a health panel of experts from Angola. The analysis focused on demographic and stroke characteristics, as well as the care provided. Ethical approval and informed consent were obtained. Results: Preliminary results of a total of 186 patients are described, 122 from a Central Acute Care Hospital, with a mean age of 51.3±14.35 years old, a BMI of 26.7±4.15 kg/m2, 41% male, and 64 patients from a Rehabilitation Center, with 55.6±11.55 years old, a BMI of 27.0±3.8 kg/m2, 53% male. Ischemic stroke was reported as the most representative type in both centers (71.3% and 70.3%, respectively), though 100% of patients had no imaging diagnosis confirmation, neither data about the subtype was given. For patients admitted to the Hospital, discharge occurred before rehabilitation, and no follow-up was possible. No rehabilitation care was delivered in the first 7 days after the stroke. In the Rehabilitation Center, patient’s rehabilitation started in the late subacute phase, after a mean of 171.8±11.5 days. Conclusions: Stroke diagnosis lacks imaging confirmation, which is decisive for proper treatment, and rehabilitation starts during the late subacute phase, which is too late considering the international guidelines and the best window of opportunity for neuroplasticity and recovery. These results highlight the urgent need for the definition of Stroke-directed Health Care Policies in Angola.

Keywords: stroke, personalized health care, functional recovery, quality of life, health policies

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Authors: Wen Hsin Hsu, Pin Lin

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Objective: Thirst discomfort is the most common yet often overlooked symptom in patients in the intensive care unit (ICU), with an incidence rate of 69.8%. If not properly cared for, it can easily lead to irritability, affect sleep quality, and increase the incidence of delirium, thereby extending the length of hospital stay. Research points out that the sensation of coldness is an effective strategy to alleviate thirst. Using a combined care approach for thirst can prolong the sensation of coldness in the mouth and reduce thirst discomfort. Therefore, it needs to be further analyzed and its effectiveness reviewed. Methods: This study uses systematic literature review and meta-analysis methodologies and searched databases including PubMed, MEDLINE, EMBASE, Cochrane, CINAHL, and two Chinese databases (CEPS and CJTD) based on keywords. JBI was used to appraise the quality of the literature. RevMen 5.4 software package was used, and Fix Effect Model was applied for data analysis. We selected experimental articles, including those in English and Chinese, that met the inclusion and exclusion criteria. Three research articles were included in total, with a sample size of 416 people. Two were randomized controlled trials, and one was a quasi-experimental design. Results: The results show that the combined care for thirst, which includes ice water spray or oral swab wipes, menthol mouthwash, and lip balm, can significantly relieve thirst intensity MD=-1.36 (3 studies, 95% CI (-1.77, -0.95), p <0.001) and thirst distress MD=-0.71 (2 studies, 95% CI (-1.32, -0.10), p =0.02). Therefore, it is recommended that medical staff identify high-risk groups for thirst early on. Implications for Practice: For patients who cannot eat orally, providing combined care for thirst can increase oral comfort and improve the quality of care.

Keywords: thirst bundle care, intensive care units, meta-analysis, ice water spray, menthol

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Authors: Adriane Amend, Leidiene Ferreira Santos, Daniella Pires Nunes

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The experience of assuming or caring for older persons dependents by relatives is a complex task that encompasses or affective involvement, the demand for technical activities and or psychological support. It would be necessary to understand the situations related to the caregiver, the person and the environment, which help the family difficulty, as a caregiver to lead this role. Objective: To identify the forces that drive and restrict the care process of family caregivers of the older adults. Method: Descriptive and exploratory research, with a qualitative approach, which has as a reference the Force Field Theory. Five family caregivers of older adult’s dependents residing in the city of Palmas, Tocantins, Brazil will participate. The data were collected from December 2021 to February 2022, through a semi-structured individual interview, and submitted to content analysis. Results: As forces that drive or process of caring for family caregivers were: the account of compassionate attitudes and patience of the caregiver (I); to the collaboration of the other person to the care and to the body structure of the same (Other); and the supports of other people not cared for and structural, such as adaptations in the room, read and bathroom, as in the presence of air conditioners (Environment). Among the restrictive forces of care we mention difficulties in delegating care to another person, or stress of care and other personal demands (I); imposition of the older person about care and e a transfer from bed to hip (Other); e lack of accessibility of the house and absence of air conditioning and hospital bed (Environment). Conclusion: The results show that there are driving forces with the caregiver's attitude and feelings, a bond as an idol and support for the caregiver and the environment. On the other hand, conflicting ties, absence of physical structure and daily and continuous care shifts, can significantly compromise well-being or the cycle of older adult, caregiver and care.

Keywords: caregivers, frail elderly, perception, geriatric nursing

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Authors: M. D. Antoine

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Despite the widespread use of complementary and alternative medicine (CAM) for autistic children, little is known about the communication flow between the different parties involved in autism care (e.g., parents/caregivers, conventional providers, alternative practitioners). This study aimed to describe how communication occurs through the first year following an autism spectrum disorder (ASD) diagnosis to identify challenges and potential barriers to communication within the healthcare system in Ottawa, Canada. From an ecological perspective, we collected qualitative data through 12 semi-structured interviews with six parents/caregivers, three conventional providers (e.g., family doctor, neurodevelopmental pediatrician, psychologist), and three alternative practitioners (e.g., naturopath, occupational therapist, speech and language pathologist) operating in Ottawa. We interpreted the data using thematic analysis. Findings revealed communication challenges between the parents/caregivers and conventional providers while they experience better communication flow with fewer challenges in alternative care settings. However, parents/caregivers are the only links between the health professionals of both streams. From the five contexts examined: organizational, interpersonal, media, cultural, and political-legal, we found four themes (provider knowledge, care integration, flexible care, and time constraints) underlining specific barriers to communication flow between the parties involved in the care of autistic children. The increasing interest in alternative medicine is forcing changes in the healthcare system. Communications occur outside the norms making openings for better communication and information-sharing increasingly essential. Within the identified themes in the current study, the necessity for better communication between all parties involved in the care of autistic children is evident. More ASD and CAM-related training for providers would support effective parent/caregiver-provider communication. The findings of the current study contribute to a better understanding of the role of communication in the care management of autism, which has implications for effective autism care.

Keywords: alternative medicine, autism care management, autism spectrum disorder, conventional medicine, parent-provider communication

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Authors: Tassana Boontong, Vilaivan Thongcharoen, Orapan Thosingha, Suphamon Chansakul, Anorut Jenwitheesuk, Chanin Chakkrapopyodhin, Isara Phiwchai, Mattika Chaichan, Rungnapha Khiewchaum

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According to Thailand health policy, subdistrict health promoting hospitals (SHPHs) serve as forefront facilities for inclusive health care service. Those services include health promotion, disease prevention, primary medical care and rehabilitation. However, SHPHs residing in some distant area, such as SHPHs residing on the islands, would deliver different services relevant to health needs of the local people and the tourists. This research aimed to study health care delivery services at SHPHs on the islands in Thailand. Data were collected using questionnaires. The result revealed that in Thailand, there are 58 SHPHs on the islands. During data collection process, the researchers were not allowed to collect data in 5 SHPHs in the southern part due to Covid-19 pandemic. The report is based on 53 SHPHs on the islands. Numbers of health care personnel were 201, 72.14 % were female, with the ages ranged from 22 to 60 years (mean = 35.56 years). About 53% were community health personnel, while 26.08% were professional nurses. In regard to work experiences, the range of year varied from less than 1 year to 30 years, with the mean of 8.36 years. The majority of their responsibilities focused on providing primary medical care (86.34%), caring of people with chronic illnesses (85.30%) and providing medical care procedures for patients with chronic illnesses at home (84.36%). Nurses were main health care personnel in performing primary medical care. Due to difficulty transportation from the islands to the mainland, nurses had to provide prompt emergency medical care while the patients arrived with emergency and critical illnesses such as severe head trauma, stroke or coronary artery disease. Although some medical procedures were complex and not covered by nursing and midwifery license, they decided to protect patients from life- threatening conditions and make them stable before transportation. In SHPHs, the workload exceeded manpower, health care personnel had to work overtime almost every day. In the famous tourist islands, health care personnel had to carry 3-4 folds of their workload during the holidays because of the large crowds of foreign and Thai tourists. It is recommended that SHPHs on the islands should scale up the level of services to cover advanced medical care. Health care personnel, in particular, professional nurses, should be equipped with emergency and critical care skills. The expected outcomes of the services should emphasize on rescuing patients with emergency and life-threatening illnesses and providing comprehensive care for people living on or visiting the islands.

Keywords: distant area, islands, sub district health promoting hospital, heath care services, Thailand

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Authors: Aneta Nitsch-Osuch, Katarzyna Zycinska, Ewa Gyrczuk, Agnieszka Topczewska-Cabanek, Kazimierz Wardyn

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Introduction: Influenza is an important clinical and epidemiological problem and should be considered as a possible nosocomial infection. The aim of the study was to determine the influenza vaccine coverage rates among Polish nurses and to find out drivers and barriers for influenza vaccination among this group of health care workers (HCWs). Material and methods: The self- fulfilled survey with 26 questions about the knowledge, perception, and influenza coverage rates was distributed among 461 nurses. Results: Only 15% of nurses were vaccinated against influenza in the consecutive seasons. The majority (75%) of the regularly vaccinated nurses were ambulatory careworkers. The difference between the number of vaccinated hospitals and ambulatory care nurses was statistically significant (p < 0.05). The main motivating factors for an influenza vaccination were: a fear of the illness and its complications (97%) and a free of charge vaccine available at the workplace (87%). Ambulatory care nurses more often declared that they were vaccinated mainly to protect themselves while hospital care nurses more often declared the will to protect their patients, these differences in the perception and attitudes to an influenza vaccination among hospital and ambulatory care nurses were statistically significant (p < 0.05). The main barriers for an influenza vaccination among the nursing staff were: a lack of reimbursement of the vaccine (95%), a lack of insufficient knowledge about the effectiveness, and safety of the influenza vaccine (54%). The ambulatory care nurses more often found influenza vaccination as the ethical duty compared to hospital care nurses (p < 0.05). Conclusions: The influenza vaccine coverage rates among the Polish nurses are low and must be improved in the future. More educational activities dedicated to HCWs may result in the increased awareness of influenza vaccination benefits for both medical professionals and patients.

Keywords: influenza, vaccination, nurses, ambulatory careworkers

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Authors: Theodorus Holtzhausen

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With a growing number of professionals in healthcare moving freely between countries and also in general a more mobile global workforce, awareness of cultural differences have become more urgent for health care workers to apply proper care. There is a slowly emerging trend in health care due to globalisation that may create a more uniform cultural base for administering healthcare, but it is still very vulnerable to being hijacked and misdirected by major commercial interests. Veterinary clinics and medical clinics promoting alternative remedies lacking evidence based support and simultaneously practicing medicine as a science have become more common. Such ‘holistic’ clinics see these remedies more as a belief system causing no harm with minimal impact but with added financial benefit to the facility. With the inarguable acceptance and realisation of the interconnection between evolutionary aspects of cognition, knowledge and culture as a global but vulnerable cognition-gaining process affecting us all, we can see the enormous responsibility we carry. Such a responsibility for creating global well-being calling for an universally applicable ethic. Such an ethic with the potential of having significant impact on our cognition gaining process.

Keywords: veterinary health care, ethics, wellbeing, veterinary clinics

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Authors: Mahmood Shamshiri

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While visual sensation is the key gate for human-being to understand the world, visual impairment is one of the common cause of disability around the world. There is no doubt about the importance of eye sight in daily life among people, even it is understood the best gift of God to human-beings in many societies. Blind people are admitted to hospital for different health issues. Nurses and other health professionals who provide care for this group of patients need to understand their patients. Understanding the lived experience of blind people helps nurses to expand their knowledge regarding blind patients in order to provide a holistic care and improve the quality of care for blind patients. This phenomenological inquiry aimed to describe the meaning of discipline in daily life of blind people admitted in hospital. An interpretive phenomenology underpinned the philosophical approach of the study. While the interpretive phenomenology played as an umbrella role in the overall point of the study, the six methodical activities which introduced by van Manen helped the researchers to conduct the study. ‘Disciplined care for disciplined patients’ was the main theme emerged from dialogues of blind patients about their daily life in the hospital. Almost all of participants called themselves as disciplined people. The theme ‘disciplined care for disciplined patients’ appeared from four sub-themes including discipline through careful touching and listening, discipline as the ideal way of existence, discipline the preferred way of being independent, desire to take disciplined and detailed care, reactions to the undisciplined caring culture. This phenomenological inquiry to the experiences of patients with blindness in hospital revealed that they commonly are disciplined people and want to be cared in well-organized caring environment. Furthermore, they need to be familiar with the new caring environment. Well-organized and familiar environment help blind patients to increase the level of independency. In addition, blind patients prefer a detail informed and disciplined caring culture. Health professionals have to consider the concept of disciplined care in order to provide a holistic and comprehensive competent care.

Keywords: disciplined people, disciplined care, lived experience, patient with blindness

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Authors: Carmen Silvia Gabriel, Maria de Fátima Paiva Brito, Mariane de Paula Candido, Vanessa Barato Oliveira

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Patient identification is a necessary practice to ensure patient safety in any healthcare environment, including emergency care units, test laboratories, home care and clinics. The present study aimed to provide evidence that can effectively contribute to practices concerning patient identification. Its objective was to investigate patient identification in basic healthcare units through patient safety standards. To do so, a descriptive and non-experimental research outline study was carried out to inquire how patient identification takes place in a particular situation. All technical manager nurses from the chosen healthcare facilities were included in the sample for the study. Data was collected in September of 2014 after approval from the Committee of Ethics. All researched institutions fit the same profile: they’re public facilities for general care with observation beds. None of them has a wristband identification protocol or policy. Only one institution mentioned using some kind of visual identification; namely, body tags separated by colors according to the type of care, but it still does not apply the recommended tags by the Brazilian Ministry of Health. This study allowed the authors to acknowledge how important the commitment from the whole healthcare team in the patient identification process is and also acknowledge how necessary it is to implement institutional policies that may aid the healthcare units in this area to promote a quality and safe patient care.

Keywords: patient safety, identification, nursing, emergency care units

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Authors: Qiuhu Shao

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Community home-based care service system, which is based on the family pension, supported by community pension and supplied by institutions pension, is an effective pension system to solve the current situation of China's accelerated aging. However, due to the fundamental realities of our country, the government is not able to bear the unilateral supply of the old-age service of the community. Therefore, based on the theory of welfare pluralism, the participation of social organizations in the home-based care service center has become an important part of the diversified supply of the old-age service for the elderly. Meanwhile, the home-based care service industry is still in the early stage, the management is relatively rough, which resulted in a large number of social resources waste. Thus, scientific, objective and long-term implementation is needed for social organizations to participate in home-based care services to guide its performance management. In order to realize the design of the performance management system, the author has done a research work that clarifies the research status of social organization's participation in home-based care service. Relevant theories such as welfare pluralism, community care theory, and performance management theory have been used to demonstrate the feasibility of data envelopment analysis method in social organization performance research. This paper analyzes the characteristics of the operation mode of the home-based care service center, and hackles the national as well as local documents, standards and norms related to the development of the home-based care industry, particularly studies those documents in Nanjing. Based on this, the paper designed a set of performance management PDCA system for home-based care service center in Nanjing and clarified each step of the system in detail. Subsequently, the research methods of performance evaluation and performance management and feedback, which are two core steps of performance management have been compared and screened in order to establish the overall framework of the performance management system of the home-based care service center. Through a large number of research, the paper summarized and analyzed the characteristics of the home-based care service center. Based on the research results, combined with the practice of the industry development in Nanjing, the paper puts forward a targeted performance evaluation index system of home-based care service center in Nanjing. Finally, the paper evaluated and sub-filed the performance of 186 home-based care service centers in Nanjing and then designed the performance optimization direction and performance improvement path based on the results. This study constructs the index system of performance evaluation of home-based care service and makes the index detailed to the implementation level, and constructs the evaluation index system which can be applied directly. Meanwhile, the quantitative evaluation of social organizations participating in the home-based care service changed the subjective impression in the previous practice of evaluation.

Keywords: data envelopment analysis, home-based care, performance management, social organization

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Authors: Olutayo Stephen Shodipo

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This paper explores how individuals with disabilities understand and express their spirituality like everyone else can help provide church ministers and religious leaders with new knowledge of human experience and change the way pastoral care ministry is being practiced with this population. Disability literature has revealed studies on various aspects of disability. However, on the spirituality of people with disabilities, there is a gap. This paper offers a brief overview of what has been studied on the spiritual needs of adults with developmental disabilities (ADDs) and the church and the gap that still exists. Along with explaining this gap, it considers the reality of ADDs’ spiritual needs and why the church needs to validate their spirituality and religious expressions and create an inclusive environment where their spiritual experience and expressions can be enhanced and supported. This paper, then, aims to explore the diverse spiritual experiences of ADDs in faith communities, and their theological, moral, and social implications for Pastoral care ministry practices.

Keywords: spirituality, inclusive ministry, pastoral theology, developmental disability, pastoral care

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Authors: Edwina Owusu Panin, Derrick Antwi

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Autism and cerebral palsy are fraternal twins in the world of communication and social interaction challenges. Caring for autistic and cerebral palsied female teenagers in Ghana can be difficult and stressful for parents. We highlight the findings of dealing with stress, where female teenagers are more daunting than male teenagers, related to the demand for a lot of attention linked to the puberty transition. This brief examines the challenges that parents face in caring for teenagers with autism and cerebral palsy in Ghana and the stress that can develop from parental care. The article also highlights the importance of identifying and addressing mental health and self-care issues in parents of disabled female teenagers, as these issues can significantly affect the well-being of both parents and their children. Parents of teenagers with disabilities often face a variety of challenges, including managing their children's care and medical needs, navigating the educational system, and addressing social and emotional needs. These challenges can be even more disheartening in Ghana, where resources and support for families of children with disabilities are limited. In a nutshell, the challenges of caring for female teenagers with autism and cerebral palsy can be significant in Ghana. The article outlines methods that parents in Ghana can take to manage their stress and provide a brighter future for their female teenagers. Parents are better able to cope with the challenges of parenting and provide the best care possible for their female teenagers with disabilities.

Keywords: autism, cerebral palsy, female teenagers, parental care

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Authors: Anne Prip, Kirsten Alling Møller, Dorte Lisbet Nielsen, Mary Jarden, Marie-Helene Olsen, Anne Kjaergaard Danielsen

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Background: The development in cancer care has shifted towards shorter hospital stays and more outpatient treatment. Today, cancer care and treatment predominantly takes place in outpatient settings where encounters between patients and health care professionals are often brief. This development will probably continue internationally as the global cancer burden seems to be growing significantly. Furthermore, the number of patients who require ambulatory treatments such as chemotherapy is increasing. Focusing on the encounters between health care professionals and patients during oncology treatment has thus become increasingly important due to a growing trend in outpatient cancer management. Objective: The aim of the systematic review was to summarize the literature from the perspective of the patient, on experiences of and the need for communication and relationships with the health care professional during chemotherapy treatment in an outpatient setting. Method: The review was designed and carried out according to the PRISMA guidelines and PICO framework. The systematic search was conducted in Medline, CINAHL, The Cochrane Library and Joanna Briggs Institute Evidence Based Practice Database. Results: In all, 1174 studies were identified by literature search. After duplicates were removed, the remaining studies (n = 1053) were screened for inclusion. Nine studies were included; qualitative (n = 5) and quantitative (n = 4) as they met the inclusions criteria. The review identified that communication and relationships between health care professionals and patients were important for the patients’ ability to cope with cancer and also had an impact on patients’ satisfaction with care in the outpatient clinic. Furthermore, the review showed that hope and positivity was a need and strategy for patients with cancer and was facilitated by health care professionals. Finally, it revealed that outpatient clinic visits framed and influenced communication and relationships. Conclusions: This review identified the significance of communication and the relationships between patients and health care professionals in the outpatient setting as it supports patients’ ability to cope with cancer. The review showed the need for health care professionals to pay attention to the relational aspects of communication in an outpatient clinic as encounters are often brief. Furthermore, the review helps to specify which elements of the communication are central in the patient-health care professional interaction from the patients' perspective. Finally, it shows a need for more research to investigate which type of interaction and intervention would be the most effective in supporting patients’ coping during chemotherapy in an outpatient clinic.

Keywords: ambulatory chemotherapy, communication, health care professional-patient relation, nurse-patient relation, outpatient care, systematic review

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