Search results for: paediatric palliative care

Authors: Jia Yin Tan, Daniel Rambei, Kate Mann, Samuel price, Ahmed Aboelela

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Introduction: Breastfeeding is a complex process, influenced by various factors. Tongue-tie may lead to breastfeeding difficulties due to an inability to suck effectively, causing sore nipples and poor infant weight gain. In the UK, most frenotomies on infants are performed by doctors, nurses, health visitors or midwives. Objectives: Evaluation of safety and efficacy of a multispecialty nurse-led rapid access tongue-tie service at Sheffield Children’s Hospital, run jointly by the ENT and paediatric surgery departments. Methodology: A retrospective observational study, including all patients attending the ENT and paediatric surgery nurse-led tongue tie clinics between 1/10/2021 and 30/09/2022. Results: During the study period there were 1135 referrals for frenotomy, with a mean of 15 days between referral to clinic episode. 86.8% of referred patients underwent frenotomy, with a complication rate of 0.1% and revision rate of 5.4%. Conclusions: Our findings suggest that our rapid access nurse-led outpatient tongue tie service is safe and efficacious, with low complication and revision rates. This suggests a potential for developing a community-based service, allowing safe and effective care closer to home.

Keywords: tongue tie, frenotomy, cost, nurse-led

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Authors: Shreya Saxena, Felix Miller-Molloy, Phillipa Bowen, Greg Fellows, Elizabeth Bowen

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Background: Complex fluid balance abnormalities are well-established post-neurosurgery and traumatic brain injury (TBI). The triple-phase response requires fluid management strategies reactive to urine output and sodium homeostasis as patients shift between Diabetes Insipidus (DI) and Syndrome of Inappropriate ADH (SIADH). It was observed, at a tertiary paediatric center, a relatively high prevalence of the above complications within a cohort of paediatric post-neurosurgical and TBI patients. An audit of the clinical practice against set institutional guidelines was undertaken and analyzed to understand why this was occurring. Based on those results, new guidelines were developed with structured educational packages for the specialist teams involved. This was then reaudited, and the findings were compared. Methods: Two independent audits were conducted across two time periods, pre and post guideline change. Primary data was collected retrospectively, including both qualitative and quantitative data sets from the CQUIN neurosurgical database and electronic medical records. All paediatric patients post posterior fossa (PFT) or supratentorial surgery or with a TBI were included. A literature review of evidence-based practice, initial audit data, and stakeholder feedback was used to develop new clinical guidelines and nursing standard operation procedures. Compliance against these newly developed guidelines was re-assessed and a thematic, trend-based analysis of the two sets of results was conducted. Results: Audit-1 January2017-June2018, n=80; Audit-2 January2020-June2021, n=30 (reduced operative capacity due to COVID-19 pandemic). Overall, improvements in the monitoring of both fluid balance and electrolyte trends were demonstrated; 51% vs. 77% and 78% vs. 94%, respectively. The number of clear fluid management plans documented postoperatively also increased (odds ratio of 4), leading to earlier recognition and management of evolving fluid-balance abnormalities. The local paediatric endocrine team was involved in the care of all complex cases and notified sooner for those considered to be developing DI or SIADH (14% to 35%). However, significant Na fluctuations (>12mmol in 24 hours) remained similar – 5 vs six patients – found to be due to complex pituitary hypothalamic pathology – and the recommended adaptive fluid management strategy was still not always used. Qualitative data regarding useability and understanding of fluid-balance abnormalities and the revised guidelines were obtained from health professionals via surveys and discussion in the specialist teams providing care. The feedback highlighted the new guidelines provided a more consistent approach to the post-operative care of these patients and was a better platform for communication amongst the different specialist teams involved. The potential limitation to our study would be the small sample size on which to conduct formal analyses; however, this reflects the population that we were investigating, which we cannot control. Conclusion: The revised clinical guidelines, based on audited data, evidence-based literature review and stakeholder consultations, have demonstrated an improvement in understanding of the neuro-endocrine complications that are possible, as well as increased compliance to post-operative monitoring of fluid balance and electrolytes in this cohort of patients. Emphasis has been placed on preventative rather than treatment of DI and SIADH. Consequently, this has positively impacted patient safety for the center and highlighted the importance of educational awareness and multi-disciplinary team working.

Keywords: post-operative, fluid-balance management, neuro-endocrine complications, paediatric

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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: Ewelina Zdebska

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

Keywords: social worker, care, terminal care, hospice

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

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

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

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Authors: L. Lamola, E. Manolas, A. Krause

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Background: The incidence of childhood cancer incidence is increasing gradually in low-middle income countries, such as South Africa. Globally, there is an extensive range of familial- and hereditary-cancer syndromes, where underlying germline variants increase the likelihood of developing cancer in childhood. Next-Generation Sequencing (NGS) technologies have been key in determining the occurrence and genetic contribution of germline variants to paediatric cancer development. We aimed to design and evaluate a candidate gene panel specific to inherited cancer-predisposing genes to provide a comprehensive insight into the contribution of germline variants to childhood cancer. Methods: 32 paediatric patients (aged 0-18 years) diagnosed with a malignant tumour were recruited, and biological samples were obtained. After quality control, DNA was sequenced using an ion Ampliseq 50 candidate gene panel design and Ion Torrent S5 technologies. Sequencing variants were called using Ion Torrent Suite software and were subsequently annotated using Ion Reporter and Ensembl's VEP. High priority variants were manually analysed using tools such as MutationTaster, SIFT-INDEL and VarSome. Putative identified candidates were validated via Sanger Sequencing. Results: The patients studied had a variety of cancers, the most common being nephroblastoma (13), followed by osteosarcoma (4) and astrocytoma (3). We identified 10 pathogenic / likely pathogenic variants in 10 patients, most of which were novel. Conclusions: According to the literature, we expected ~10% of our patient population to harbour pathogenic or likely pathogenic germline variants, however, we reported about 3 times (~30%) more than we expected. Majority of the identified variants are novel; this may be because this is the first study of its kind in an understudied South African population.

Keywords: Africa, genetics, germline-variants, paediatric-cancer

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

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

Keywords: radiotherapy, veterinary oncology, chemotherapy, osteosarcoma

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Authors: Chick Loveline Ayoh Epse Ndi

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

Keywords: challeng, therapy, agtng, diseases cameroon

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

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

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

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Authors: Szu Mei Hsiao

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

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

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Authors: Chuang-Chun Chiou

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

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

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Authors: T. Turan, Ç. Erdoğan

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

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

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Authors: Bronwyn Griffin, Caroline Acton, Tona Gillen, Roy Kimble

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Background: Bicycle riding is a common recreational activity enjoyed by many children throughout Australia that has been associated with the usual caveat of benefits related to exercise and recreation. Given Australia was the first country in the world to introduce cyclist helmet laws in 1991, very few publications have reviewed paediatric cycling injuries (fatal or non-fatal) since. Objectives: To identify trends in children (0-16 years) who required admission for greater than 24 hours following a bicycle-related injury (fatal and non-fatal) in Queensland. Further, to discuss changes that have occurred in paediatric cycling injury trends in Queensland since a prominent local study/publication in 1995. This paper aims to establish evidence to inform interventions promoting safer riding to parents, children and communities. Methods: Data on paediatric (0-16 years) cycling injuries in Queensland resulting in hospital admission more than 24 hours across three tertiary paediatric hospitals in Brisbane between November 2008-June 2015 was compiled by the Paediatric Trauma Data Registry for non-fatal injuries. The Child Death Review Team at the Queensland Families and Childhood Commission provided data on fatalities in children <17years from (June 2004 –June 2015). Comparing trends to a local study published in 1995 Results: Between 2008-2015 there were 197 patients admitted for greater than 24 hours following a cycling injury. The median age was 11 years, with males more frequently involved (n=139, 87%) compared to females. Mean length of stay was three days, with 47 (28%) children admitted to PICU, location of injury was most often the street (n=63, 37%). Between 2004 –2015 there were 15 fatalities (Incidence rate 0.25/100,000); all were male, 14/15 occurred on the street, with eight stated to have not been wearing a helmet, 11/15 children came from the least advantaged socio-economic group (SEIFA) compared to a local publication in 1995, finding of 94 fatalities between (1981-1992). Conclusions: There has been a notable decrease in incidence of fatalities between the two time periods with incidence rates dropping from 1.75-0.25/100,000. More statistics need to be run to ascertain if this is a true reduction or perhaps a decrease in children riding bicycles. Injuries that occur on the street that come in contact with a car remain of serious concern. The purpose of this paper is not to discourage bicycle riding among child and adolescent populations, rather, inform parents and the wider community about the risks associated with cycling in order to reduce injuries associated with this sport, whilst promoting safe cycling.

Keywords: paediatric, cycling, trauma, prevention, emergency

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Authors: Hazel S. Cometa-Lamberte

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

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

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Authors: Eduard Fosch-Villaronga

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

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

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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: Sharmistha Mukherjee

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

Keywords: availability, distribution, health care, utilization

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Authors: Julius Lenaerts, Ahmed Elsaadawy, Mohammed Bashir

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

Keywords: ICU, eye care, risk, QIP

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Authors: Evangelia Kotrotsiou, Mairy Gouva, Theodosios Paralikas, Maria Fiaka, Styliani Kotrotsiou, Maria Malliarou

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The purpose of this research is to investigate the way nurses perceive the care provided in comparison to the way patients perceive it, taking into account existing literature. As far as the sample of research is concerned, it has come from the population of nurses working in the General Hospital of Thessaloniki, St. Paul and the patients of its surgical clinic. In the present study, the sample consists of 100 nurses and 88 patients. The questionnaire used was the Caring Nurse-Patient Interactions Scale: 23-Item Version, created by Cossette et al. (2006). In the case of both patients and nurses, a high score was observed in relational care in the case of the frequency of nursing care in daily practice, as well as the satisfaction of providing nursing care. Overall, patients rated higher clinical care in the case of the frequency of nursing care in daily practice, as well as the satisfaction of the clinical care they were given. On the other hand, nurses rated higher comfort care in the case of the frequency of nursing care in everyday practice, as well as relational care in the area of the importance of nursing care in everyday practice.

Keywords: nursing care, patient needs, patient satisfaction, care giving

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Authors: Nadia Arikat, Katharine Blain

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During the worst of the COVID pandemic, only essential treatment was provided for patients needing urgent care. With the prolonged extent of the pandemic, there has been a return to more routine referrals for paediatric dentistry advice and treatment for specialist conditions. However, some of these patients and/or their carers may have significant medical issues meaning that attending in-person appointments carries additional risks. This poses an ethical dilemma for clinicians. This project looks at how a secure video conferencing platform (“Near Me”) has been used to assess the need and urgency for in-person new patient visits, particularly for patients and families with additional risks. “Near Me” is a secure online video consulting service used by NHS Scotland. In deciding whether to bring a new patient to the hospital for an appointment, the clinical condition of the teeth together with the urgency for treatment need to be assessed. This is not always apparent from the referral letter. In addition, it is important to judge the risks to the patients and carers of such visits, particularly if they have medical issues. The use and effectiveness of “Near Me” consultations to help decide whether vulnerable paediatric patients should have in-person appointments will be illustrated and discussed using two families: one where the child is medically compromised (Alagille syndrome with previous liver transplant), and the other where there is a medically compromised parent (undergoing chemotherapy and a bone marrow transplant). In both cases, it was necessary to take into consideration the risks and moral implications of requesting that they attend the dental hospital during a pandemic. The option of remote consultation allowed further clinical information to be evaluated and the families take part in the decision-making process about whether and when such visits should be scheduled. These cases will demonstrate how medically compromised patients (or patients with vulnerable carers), could have their dental needs assessed in a socially distanced manner by video consultation. Together, the clinician and the patient’s family can weigh up the risks, with regards to COVID-19, of attending for in-person appointments against the benefit of having treatment. This is particularly important for new paediatric patients who have not yet had a formal assessment. The limitations of this technology will also be discussed. It is limited by internet availability, the strength of the connection, the video quality and families owning a device which allows video calls. For those from a lower socio-economic background or living in some rural areas, this may not be possible or limit its usefulness. For the two patients discussed in this project, where the urgency of their dental condition was unclear, video consultation proved beneficial in deciding an appropriate outcome and preventing unnecessary exposure of vulnerable people to a hospital environment during a pandemic, demonstrating the usefulness of such technology when it is used appropriately.

Keywords: COVID-19, paediatrics, triage, video consultations

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Authors: Sayna Bahraini, Wendy Gifford, Ian Graham, Liquaa Wazni, Suzettee Bremault-Phillips, Rebekah Hackbusch, Catrine Demers, Mary Egan

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Objective: Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence on the accuracy of measures used to screen adults for spiritual suffering. Methods: A systematic review has been conducted. We searched five scientific databases to identify relevant articles. Two independent reviewers screened extracted data and assessed study methodological quality. Results: We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the 2-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82-87%), and the revised Rush protocol has the highest specificity (81-90%). The methodological quality of all included studies was low. Significance of Results: While most of the identified spiritual screening measures are brief (comprise 1 to 12 number of items), few have sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.

Keywords: screening, suffering, spirituality, diagnostic test accuracy, systematic review

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Authors: Christina Tran, Lu Khoo, Andrea Waylen

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Introduction: The evolution of the dental consultation from paternalism to partnership has been well documented in developed Western countries. Great emphasis is now placed on the importance of empowering patients to make decisions regarding their care, obtaining informed consent, and maintaining patient privacy and confidentiality. With the majority of communication occurring non-verbally, clinicians often adopt behaviours which suggest an approachable and positive attitude. However, evidence indicates that in Asia, a paternalistic model may be favored in medicine. The power imbalance occurring in doctor-patient relationships worldwide may be exacerbated by various factors in Southeast Asia: the strong hierarchical culture, and the large education gap between doctor and patient. Further insight into this matter can be gained by observing patient-dentist communication in Cambodia. The dentist:population ratio in Cambodia is approximately 1:33,000, with rural areas remaining extremely underserviced. We have carried out an observational study of communication in a voluntary dental clinic in Cambodia with the aim of describing whether the patient-dentist relationship follows a paternalistic or patient-centred model. Method: Over a period of two weeks, two clinicians provided dental care as part of a voluntary program in two Cambodian settings: a temporary, rural clinic and a permanent clinic in Phnom Penh. The clinicians independently recorded their experiences in diaries, making observations on the verbal and non-verbal communication between patients and staff. General observations such as the clinic environment were also made. The diaries were then compared and analyzed using a thematic approach. Results: The overall themes that emerged were regarding the clinic environment, verbal communication, and non-verbal communication. Regarding the clinic environment, the rural clinic was arranged in order to easily direct patients from one dentist to another, with little emphasis on continuous patient care. There was also little consideration for patient privacy: patients were often treated in the presence of many observers, including other waiting patients. However, the permanent clinic was structured to allow greater patient privacy, with continuous patient care occurring throughout the appointment. Regarding verbal communication, there was a strongly paternalistic approach to gaining consent and giving instruction. Patients rarely asked questions regarding their treatment, with dentists doing little to encourage patient involvement. Non-verbal communication between patients and dentists was generally paternalistic, with the dentist often addressing the supine patient from above. Patients often avoided making eye-contact, which may have indicated discomfort or lack of engagement. Both adult and paediatric patients rarely raised verbal concerns regarding pain during treatment, despite displaying non-verbal signs of experiencing pain. Anxious paediatric patients were sometimes managed with physical restraint by their mothers to facilitate treatment. Conclusion: Patient-professional communication in the Cambodian dental setting was observed to be generally paternalistic in nature, although more patient-centred aspects were observed in the established, urban setting. However, it should be noted that these observations are subjective in nature, and that the patients’ actual perceptions of their communication experience were unexplored. Further observations in variety of dental settings in Cambodia are needed before any definitive conclusions can be made.

Keywords: patient-dentist communication, paternalism, patient-centered, non-verbal communication

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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: Ahlam Ali, Katrina Lappin, Jaine Blayney, Ken Mills

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Leukaemia is the most frequently (30%) occurring type of paediatric cancer. Of these, approximately 80% are acute lymphoblastic leukaemia (ALL) with acute myeloid leukaemia (AML) cases making up the remaining 20% alongside other leukaemias. Unfortunately, children with AML do not have promising prognosis with only 60% surviving 5 years or longer. It has been highlighted recently the need for age-specific therapies for AML patients, with paediatric AML cases having a different mutational landscape compared with AML diagnosed in adult patients. Drug Repurposing is a recognized strategy in drug discovery and development where an already approved drug is used for diseases other than originally indicated. We aim to identify novel combination therapies with the promise of providing alternative more effective and less toxic induction therapy options. Our in-silico analysis highlighted ‘cell death and survival’ as an aberrant, potentially targetable pathway in paediatric AML patients. On this basis, 83 apoptotic inducing compounds were screened. A preliminary single agent screen was also performed to eliminate potentially toxic chemicals, then drugs were constructed into a pooled library with 10 drugs per well over 160 wells, with 45 possible pairs and 120 triples in each well. Seven cell lines were used during this study to represent the clonality of AML in paediatric patients (Kasumi-1, CMK, CMS, MV11-14, PL21, THP1, MOLM-13). Cytotoxicity was assessed up to 72 hours using CellTox™ Green reagent. Fluorescence readings were normalized to a DMSO control. Z-Score was assigned to each well based on the mean and standard deviation of all the data. Combinations with a Z-Score <2 were eliminated and the remaining wells were taken forward for further analysis. A well was considered ‘successful’ if each drug individually demonstrated a Z-Score <2, while the combination exhibited a Z-Score >2. Each of the ten compounds in one well (155) had minimal or no effect as single agents on cell viability however, a combination of two or more of the compounds resulted in a substantial increase in cell death, therefore the ten compounds were de-convoluted to identify a possible synergistic pair/triple combinations. The screen identified two possible ‘novel’ drug pairing, with BCL2 inhibitor ABT-737, combined with either a CDK inhibitor Purvalanol A, or AKT/ PI3K inhibitor LY294002. (ABT-737- 100 nM+ Purvalanol A- 1 µM) (ABT-737- 100 nM+ LY294002- 2 µM). Three possible triple combinations were identified (LY2409881+Akti-1/2+Purvalanol A, SU9516+Akti-1/2+Purvalanol A, and ABT-737+LY2409881+Purvalanol A), which will be taken forward for examining their efficacy at varying concentrations and dosing schedules, across multiple paediatric AML cell lines for optimisation of maximum synergy. We believe that our combination screening approach has potential for future use with a larger cohort of drugs including FDA approved compounds and patient material.

Keywords: AML, drug repurposing, ABT-737, apoptosis

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Authors: Danila Zuffetti, Lorenzo Chiesa

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Background: A hospice narrative interview aims at putting the sick at the core of disease and treatment allowing them to explore their most intimate facets. The aim of this work is to favor authentic narration by leading towards awareness and acceptance of terminality and to face death with serenity. Narration in palliative care aims at helping to reduce the chaos generated by the disease and to elaborate interpretations on the course of reality, besides, the narration delivered to the doctor is fundamental and communicates the meaning given to symptoms. Methods: The narrative interview has become a regular activity in the Castellini Foundation since 2017. Patients take part every week, and for more days, in one hour sessions, in a welcoming and empathic setting and the interaction with the operator leads to a gradual awareness of their terminality. Patients are submitted with free answer questions with the purpose of facilitating and stimulating self-narration. Narration has not always been linear, but patients are left free to shift in time to revisit their disease process by making use of different tools, such as digital storytelling. Results: The answers provided by the patients show to which extent the narrative interview is an instrument allowing the analysis of the stories and gives the possibility to better understand and deepen the different implications of patient and caregiver’s background. Conclusion: The narration work in the hospice demonstrates that narrative medicine is an added value. This instrument has proven useful not only in the support of patients but also for the palliative doctor to identify wishes for accompanying them to the end with dignity and serenity. The narrative interview favors the construction of an authentic therapeutic relationship. The sick are taken wholly in charge, and they are guaranteed a high quality of life until their very last instant.

Keywords: construction of an authentic therapy relationship, gradual awareness of their terminality, narrative interview, reduce the chaos generated by the desease

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Authors: Mrudula Kudtarkar, Rajesh Mane

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Introduction: Cleft lip repair is one of the common surgeries performed in India and the usual method used for post-operative analgesia is perioperative opioids and NSAIDs. There has been an increase in use of regional techniques and Opioids are the common adjuvants but their efficacy and safety have not been studied extensively in children. Aim: A prospective, randomized, double-blind study was done to compare the efficacy, duration and safety of intraoral infraorbital nerve block on post-operative pain relief using bupivacaine alone or in combination with fentanyl or pethidine in paediatric cleft lip repair. Methodology: 45 children between the age group 5 – 60 months undergoing cleft lip surgery randomly allocated into 3 groups of 15 each received bilateral intraoral infraorbital nerve block with 0.75ml of solution. Group B received 0.25% bupivacaine; group P received 0.25% bupivacaine with 0.25mg/kg pethidine, group F received 0.25% bupivacaine with 0.25microgm/kg fentanyl. Sedation after recovery, post-operative pain intensity and duration of post-operative analgesia were assessed using Modified Hannallah Pain Score. Results: The mean duration of analgesia was 17.8 hrs in Group B, 23.53 hrs in Group F and 35.13 hrs in Group P. There was statistically significant difference between the means of the three groups- ANOVA (p < 0.05). Conclusion: Thus we conclude that addition of fentanyl or pethidine to bupivacaine for Bilateral Intraoral Infraorbital Nerve Block prolong the duration of analgesia with no complications and can be used safely in paediatric patients.

Keywords: cleft lip, infraorbital block, NSAIDS, Opiods

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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: James D. Beauchemin

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This study tested whether youth mental health care quality, operationalized as the extent to which youth and families experienced system-of-care principles in service interactions with providers, varied by level of youth need after adjusting for sociodemographic and treatment factors. The relationship of quality to clinical outcomes was also examined. Using administrative data and cross-sectional surveys from a stratified random sample of 1,124 caregivers of youths ages 5 to 20 within a statewide system-of-care, adjusted analyses indicated youths with the most intensive needs were significantly less likely to experience high-quality care (51% vs. 63%, p=0.016), with marked deficits on 6 of 9 items. Receipt of lower-quality care predicted less improvement in youth functioning. Despite considerable effort to develop systems-of-care for youths with the most severe mental health needs, these data suggest quality disparities remain for the most impaired youths. Policy and intervention development may be needed to improve the quality of care for this population.

Keywords: system-of-care, adherence, mental health, youth

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