Team Of Caregivers Research Articles

A Review of Dementia with Lewy Bodies' Impact, Diagnostic Criteria and Treatment.

Dementia with Lewy bodies is one of the most common causes of dementia. It is not as common as Alzheimer’s disease; the general public's awareness of the disease is poor in comparison. Its effects on caregivers and patients alike are not well known to the general population. There are currently no FDA-approved medications specifically for the treatment of DLB. Many of the medications that are approved for Alzheimer’s disease are widely used in the treatment of DLB with varying degrees of success. Treatment of DLB is life long and requires a dedicated team of physicians and caregivers to minimize the degree of morbidity and mortality experienced by the patients suffering from the disease as it progresses.

Pediatric extensor truncal dystonia treatment with botulinum toxin

Axial dystonia resulting in opisthotonus is observed in some children and adults with cerebral palsy and other brain disorders. This motor disorder results from involuntary activation of the trunk and cervical muscles and is associated with motor disability and pain. Usually opisthotonus does not respond to oral medications. The aim of this study is to examine the effect of botulinum toxin treatment in opisthotonus, and to objectify the patient's response and satisfaction. Six patients with opisthotonus were included in the study, the causes of dystonia being cerebral palsy (2 cases), traumatic brain injury (1 case), neurometabolic disease (2 cases) and autoimmune encephalitis (1 case). Interview with the patients and their caregivers determined the main problems in daily living resulting from opisthotonus and helped to define the goals of botulinum toxin therapy. The clinical examination performed by the injector identified the type of opisthotonus and the muscles to be injected in order to obtain the optimum effect. A set of goals by the patient, caregiver and rehabilitation team was decided for each patient. Each goal was rated on a five-point scale. Botulinum toxin was injected under electromyographic guidance into the chosen muscles of the neck and trunk (posterior and anterior muscles as needed). The Goal Attainment Scale (GAS) was used to evaluate treatment outcome. All individual baseline GAS scores were below 40. After BTX-A treatment, outcome GAS scores were above 60 in 5 cases and above 50 in one case. All individual GAS changes were positive, with a greater than 10 point-difference, which is considered to be of clinical importance. Botulinum toxin treatment of selected muscles of the neck and trunk is a promising solution in pediatric dystonic opisthotonus. The GAS instrument can depict the positive changes for the patient provided by this treatment.

Post-colonial countertransference, a Brazilian experience

A team of caregivers travelled to the favelas of a Brazilian province. They were subjected to emotionally charged situations, working with people faced with extreme poverty and poor health. They highlight a cultural countertransference requiring an objective approach to the psychological and political repercussions of these situations.

Give music therapy a chance in post-stroke rehabilitation

Researching music in the field of stroke rehabilitation [i] is now encouraged and is becoming a field of increasing interest. This study aimed to investigate how patients and caregivers experience music therapy when it is included in routine stroke rehabilitation. The study was performed among inpatients in a PRM department. Music therapy sessions were included in usual routine care from October 2015 to April 2016. Each patient received 40-min individual sessions of music therapy, twice a week, for at the most 2 months, consisted of listening to recorded music and practicing improvisation with an instrument. The perceptions of caregivers and patients were analysed by using questionnaires specifically designed for the study. Thirty-one caregivers returned the questionnaire. The feasibility of music therapy was considered good for 90%: sessions were simple to implement, easily integrated into the course of the day and did not disrupt the functioning of the department. All caregivers believed that the therapy may improve practices in stroke rehabilitation and be helpful to the patient. Fifty-three % of the caregivers noted positive improvement in patients, especially in mood, motivation, self-esteem, oral expression and behavior. Eleven patients followed the program and completed 69 survey cards over 118 sessions. All said they had benefited from music therapy. To describe their feelings after a music therapy session, they often first chose the word “relaxed”, “quiet”, “alert”, “rested”, and “light”. Furthermore, with the open question “What does music therapy bring to you?”, we observed 3 types of answers: “something else in the hospital care experience”, “music discovery, hearing and expressing, playing”, and “a kind of creativity with improvisation”. The reaction of the caregiver team was excellent and patient compliance was also excellent. We conclude on the feasibility of music therapy in a PRM department for post-stroke inpatients.

Development and Evaluation of an Ethical Guideline for Decisions to Limit Life-Prolonging Treatment in Advanced Cancer: Protocol for a Monocentric Mixed-Method Interventional Study.

BackgroundMany patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and therefore die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment.ObjectiveThe aim of this Ethics Policy for Advanced Care Planning and Limiting Treatment Study is to develop an ethical guideline for end-of-life decisions and to evaluate the impact of this guideline on clinical practice regarding the following target goals: reduction of decisional conflicts, improvement of documentation transparency and traceability, reduction of distress of the caregiver team, and better knowledge and consideration of patients’ preferences.MethodsThis is a protocol for a pre-post interventional study that analyzes the clinical practice on treatment limitation before and after the guideline implementation. An embedded researcher design with a mixed-method approach encompassing both qualitative and quantitative methods is used. The study consists of three stages: (1) the preinterventional phase, (2) the intervention (development and implementation of the guideline), and 3) the postinterventional phase (evaluation of the guideline’s impact on clinical practice). We evaluate the process of decision-making related to limiting treatment from different perspectives of oncologists, nurses, and patients; comparing them to each other will allow us to develop the guideline based on the interests of all parties.ResultsThe first preintervention data of the project have already been published, which detailed a qualitative study with oncologists and oncology nurses (n=29), where different approaches to initiation of end-of-life discussions were ethically weighted. A framework for oncologists was elaborated, and the study favored an anticipatory approach of preparing patients for forgoing therapy throughout the course of disease. Another preimplementational study of current decision-making practice (n=567 patients documented) demonstrated that decisions to limit treatment preceded the death of many cancer patients (62/76, 82% of deceased patients). However, such decisions were usually made in the last week of life, which was relatively late.ConclusionsThe intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients’ treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team.Registered Report IdentifierRR1-10.2196/9698

Preferences for home- and community-based long-term care services in Germany: a discrete choice experiment.

Most people prefer to "age in place" and to remain in their homes for as long as possible even in case they require long-term care. While informal care is projected to decrease in Germany, the use of home- and community-based services (HCBS) can be expected to increase in the future. Preference-based data on aspects of HCBS is needed to optimize person-centered care. To investigate preferences for home- and community-based long-term care services packages. Discrete choice experiment conducted in mailed survey. Randomly selected sample of the general population aged 45-64years in Germany (n = 1.209). Preferences and marginal willingness to pay (WTP) for HCBS were assessed with respect to five HCBS attributes (with 2-4 levels): care time per day, service level of the HCBS provider, quality of care, number of different caregivers per month, co-payment. Quality of care was the most important attribute to respondents and small teams of regular caregivers (1-2) were preferred over larger teams. Yet, an extended range of services of the HCBS provider was not preferred over a more narrow range. WTP per hour of HCBS was €8.98. Our findings on preferences for HCBS in the general population in Germany add to the growing international evidence of preferences for LTC. In light of the great importance of high care quality to respondents, reimbursement for services by HCBS providers could be more strongly linked to the quality of services.

#Cleft: The use of Social Media Amongst Parents of Infants with Clefts.

Many societies and organizations are using social media to reach their target audience. The extent to which parents of patients with craniofacial anomalies use social media has yet to be determined. The goal of this study is to characterize and describe the use of social media by the parents of children with cleft lip and palate as it pertains to the care of their child. Parents or guardian of all patients presenting for initial consultation regarding a child's congenital cleft anomaly were contacted by phone or mail to complete a survey regarding their use of social media vis-à-vis their child's cleft anomaly. Participants were asked to answer a 19-question survey. Thirty-two families were contacted and 25 surveys were completed. Ninety-two percent of respondents used social media to learn about their child's diagnosis. Facebook (76%) and blogs (24%) were the most commonly accessed social media outlets, followed by Instagram (8%). Education about the diagnosis and treatment of cleft pathology (87%) was the most common reason for accessing social media, followed by companionship and support (56%), and advice about perioperative care (52%). Almost half (43%) of parents used social media to obtain information on their caregiver and treatment team, and 26% of parents used information gained on social media to guide their decision on where to seek care. Social media is a readily available resource, one that will certainly shape the experiences of our patients and families for years to come.

660 - Outpatient Transplantation: Processes and Tools to Support the Patient, Caregiver and Transplant Team to Enhance the Experience

660 - Outpatient Transplantation: Processes and Tools to Support the Patient, Caregiver and Transplant Team to Enhance the Experience

What are the ethical dimensions in the profession of intensive care specialist?

Two essential components of the profession of a medical doctor are the constant review of the patient's therapeutic project, and collaboration between healthcare professionals. The profession of intensive care unit (ICU) physician goes further in terms of responsibility, vis-à-vis the intensive treatments dispensed to the patients, and the physician's responsibilities towards the patient's family and the caregiving team, also bearing in mind that ICU care is costly in terms of human and financial resources. In this review, we address the profession of ICU physician from the perspective of the ethical questions that arise constantly, focusing on the timeframe of the reflection process. Firstly, admission to the ICU must be anticipated. The concept of advance care planning is a suitable tool for this, and in case of non-admission to the ICU, does not by any means constitute an abandonment of the patient, because palliative care can also be anticipated, with a view to avoiding suffering for the patient and their family. Next, during an ICU stay, while the technical aspects undoubtedly characterise the ICU best at the start of the patient's stay, the process of reflection rapidly becomes preponderant, and involves the analysis of often complex situations with a view to defining the level of therapeutic engagement and optimizing the care dispensed to the patient. Last, a further ethical issue concerns the decision to re-admit (or not) a patient to the ICU. This decision can be made, for example, in the framework of a systematic, formalised, structured, multidisciplinary meeting at the end of an ICU stay, using a similar procedure to that implemented for decisions relating to withholding or withdrawal of life-sustaining therapies. The profession of ICU physician is not simply a question of prolonging or sustaining life, but is also fraught with ethical questions about how best to employ their competences. In this regard, it is essential to foster interdisciplinary collaboration, and emphasise the need for ICU physicians to be involved in the development of therapeutic projects, particularly when the disease in question is likely to be complicated by acute situations that may require admission of the patient to the ICU.

Simulation-based interprofessional conference: a focus on patient handoffs and critical communication.

The WHO expert group in Geneva has discussed the concept of interprofessional education as early as 1973. Several decades later the WHO published the Framework for Action and Interprofessional Education and Collaborative Practice in 2010.1 The key messages of the framework are that interprofessional training is necessary to have a collaborative practice-ready workforce, and that this training strengthens health systems and improves health outcomes. A key component of interprofessional training is communication education around patient handoffs. A handoff is the process of transferring patients and their healthcare information from one team of caregivers to another. There is clearly a causal relationship between effective handoffs and patient outcomes, such as adverse events.2 3 To that end, acutely ill patients rapidly transition through the healthcare system and are cared for by multiple teams of providers in a very short time period. The ability of these teams to effectively deliver interprofessional care and safely perform patient handoffs is paramount for good outcomes. We sought to develop an interprofessional conference where providers could follow a patient from first contact with healthcare professionals …

Extended, continuous measures of functional status in community dwelling persons with Alzheimer’s and related dementia: Infrastructure, performance, tradeoffs, preliminary data, and promise

BackgroundThe past decades have seen phenomenal growth in the availability of inexpensive and powerful personal computing devices. Efforts to leverage these devices to improve health care outcomes promise to remake many aspects of healthcare delivery, but remain in their infancy. New methodWe describe the development of a mobile health platform designed for daily measures of functional status in ambulatory, community dwelling subjects, including those who have Alzheimer’s disease or related neurodegenerative disorders. Using Smartwatches and Smartphones we measure subject overall activity and outdoor location (to derive their lifespace). These clinically-relevant measures allow us to track a subject’s functional status in their natural environment over prolonged periods of time without repeated visits to healthcare providers. Functional status metrics are integrated with medical information and caregiver reports, which are used by a caregiving team to guide referrals for physician/APRN/NP care. Comparisonwith Existing Methods We describe the design tradeoffs involved in all aspects of our current system architecture, focusing on decisions with significant impact on system cost, performance, scalability, and user-adherence. ResultsWe provide real-world data from current subject enrollees demonstrating system accuracy and reliability. ConclusionsWe document real-world feasibility in a group of men and women with dementia that Smartwatches/Smartphones can provide long-term, relevant clinical data regarding individual functional status. We describe the underlying considerations of this system so that interested organizations can adapt and scale our approach to their needs. Finally, we provide a potential agenda to guide development of future systems.

Sources of distress for physicians and nurses working in Swiss neonatal intensive care units.

Medical personnel working in intensive care often face difficult ethical dilemmas. These may represent important sources of distress and may lead to a diminished self-perceived quality of care and eventually to burnout. The aim of this study was to identify work-related sources of distress and to assess symptoms of burnout among physicians and nurses working in Swiss neonatal intensive care units (NICUs). In summer 2015, we conducted an anonymous online survey comprising 140 questions about difficult ethical decisions concerning extremely preterm infants. Of these 140 questions, 12 questions related to sources of distress and 10 to burnout. All physicians and nurses (n = 552) working in the nine NICUs in Switzerland were invited to participate. The response rate was 72% (398). The aspects of work most commonly identified as sources of distress were: lack of regular staff meetings, lack of time for routine discussion of difficult cases, lack of psychological support for the NICU staff and families, and missing transmission of important information within the caregiver team. Differences between physicians' and nurses' perceptions became apparent: for example, nurses were more dissatisfied with the quality of the decision-making process. Different perceptions were also noted between staff in the German- and French- speaking parts of Switzerland: for example, respondents from the French part rated lack of regular staff meetings as being more problematic. On the other hand, personnel in the French part were more satisfied with their accomplishments in the job. On average, low levels of burnout symptoms were revealed, and only 6% of respondents answered that the work-related burden often affected their private life. Perceived sources of distress in Swiss NICUs were similar to those in ICU studies. Despite rare symptoms of burnout, communication measures such as regular staff meetings and psychological support to prevent distress were clearly requested.

Elders Need Special Attention When Adult Children Die

Elders Need Special Attention When Adult Children Die

Compassion Fatigue and Compassion Satisfaction in Hospice Social Work

ABSTRACTAs part of the interprofessional team of hospice caregivers, social workers are exposed to multiple stressors, both in their work with dying patients and their families and in functioning as professionals within rapidly changing health care organizations. Ongoing exposure to such stressors prompts concern about the emotional and psychological effect working with people who are dying may have on those who do it. Further, an understanding is needed regarding how hospice social workers interpret the costs and benefits of their work and how they cope with the dying and loss that pervade their everyday work lives. This descriptive, cross-sectional study explored the prevalence of compassion fatigue among hospice social workers and considered compassion satisfaction as a means to mitigate compassion fatigue. Fifty-five hospice social workers from 34 hospice organizations in Michigan completed an online survey. Results suggested that compassion fatigue is indeed a concern among hospice social workers. In addition, compassion fatigue and compassion satisfaction were found to be negatively correlated and suggested that compassion satisfaction may act as a protective mechanism against compassion fatigue. These results may provide insight regarding how best to mitigate this professional hazard in end-of-life social work.

Choosing a miracle: Impoverishment, mistrust, and discordant views in abandonment of treatment of children with cancer in El Salvador.

In El Salvador, at the only hospital offering pediatric oncology care, the number of children abandoning treatment for cancer has decreased in recent years (13%-3%). An investigation of caregivers' motives for abandonment was performed over 15months from 2012 to 2014. Caregiver and health team perspectives on abandonment are reported using the explanatory model (EM) framework. Semistructured in-depth interviews and in hospital participant observations were conducted with caregivers of children diagnosed with cancer, who abandoned their child's treatment or were considering abandoning, and with members of the medical team. Of the 41 caregivers interviewed, 26 caregivers (of 19 children) abandoned their child's treatment, returned from a series of missed appointments, or showed a risk of abandoning. Caregivers of 8 children stated that a miraculous cure was the main reason for abandoning; increasing impoverishment and misgivings toward treatment and outcomes were also mentioned. The responses of the medical team demonstrated a discordant EM for the child's cancer and treatment effects and that only biomedical treatment was effective for cure. The caregivers' increasing impoverishment (not only financial) and misgivings about the child's treatment caused them to reconsider their therapeutic choices and rely on their belief in a miraculous cure, thus abandoning. The caregivers and medical team's discordant EM about the child's cancer and treatment must be acknowledged and shared decision making considered, together with consistency in the strategies that currently demonstrate to be effective decreasing abandonment.

Good practices according to WHO's recommendation for normal labor and birth and women's assessment of the care received: the "birth in Brazil" national research study, 2011/2012.

BackgroundThe World Health Organization recommends good practices for the conduct of uncomplicated labor and birth, with the aim of improving the quality of and assessment by women of childbirth care. The aim of this study was to evaluate the association between adoption of good practices according to WHO’s recommendation for normal labor and birth and assessment by women of the care received.MethodsBirth in Brazil is a national hospital-based study with countrywide representation consisting of 23,894 mothers and their newborns, conducted between February 2011 and October 2012. The present study analysed a subsample of this national survey. Postpartum women classified as low risk during pregnancy who had experienced either spontaneous or induced labor were included in this study, totalling 4102 mothers. To estimate the association between assessment by women of the childbirth care received (dependent variable) and good practices according to WHO’s recommendation during normal labor and birth (independent variables), a multinomial logistic regression analysis was used and crude and adjusted odds ratios calculated with their 95 % confidence intervals.ResultsThe good practices associated with positive assessment of the care received by women during labor and birth included the partner’s presence, privacy in the birthing place, time available to ask questions, clarity of information received, and empathic support from caregivers during labor and birth. Freedom of movement, free nutrition offered, choice of companions, nonpharmacological analgesia, skin-to-skin contact and breastfeeding in the childbirth room were not associated with the assessment by women of the care received.ConclusionsOur findings reveal the importance to mothers of their relationship with the team of caregivers during labor and birth. Therefore, caregiver teams must be qualified within a more humanistic vision of childbirth health care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12978-016-0233-x) contains supplementary material, which is available to authorized users.

Remaining a caregiver in the face of a refusal of nursing care

Caregivers working with elderly people often find themselves in a difficult position when faced with the refusal of nursing care, whether or not the patient presents cognitive disorders. The nurses from the mobile geriatrics team of Rennes university hospital are regularly asked to help the caregiving teams in such situations. Refusals may concern washing, medication, eating, moving to an armchair, the organisation of physical aids or human assistance after discharge or transfer to a nursing home.

Nurse Practitioner Role Value in Hospitals: New Strategies for Hospital Leaders.

Hospital leaders in Canada are continuously seeking new ways to meet patient needs and Ministry of Health priorities. One approach, integrating nurse practitioners (NPs) into the interprofessional team of caregivers, has demonstrated the quality outcomes hospital leaders seek. However, hospital leaders report there is limited information available to them to clearly know NP role value. This is concerning, as these leaders make the employment and integration decisions that enable role success. The lack of information for leaders has left NP role integration success to chance. Without clear strategies, there is risk that hospital NP roles will not be integrated such that optimal practice and quality outcomes can be achieved. This paper aims to provide pragmatic information for hospital leaders using a real-life example of a hospital NP role. Optimal NP practice and outcomes are described using the three major practice foci of a new evidenced-based framework specific to the hospital NP role. New strategies to support successful integration and role value optimization are provided for hospital leaders, physicians and NPs.

Elderly Care Ethics: A Glance on Principlism

Being a low-income country of South Asia region, Bangladesh has been struggling with its health budget for increasing elderly population over the decades. However, concerns regarding the aging population and its impact on country’s socio-economic status have come to the forefront in the policy making and implementation towards national development in recent years. This paper is intended to discuss ethical issues, in context of principlism, that are likely to arise and the means to deal with ethical dilemmas in healthcare of elderly people involving seniors themselves and their service providers whether professionals or family members. To provide the highest level of care, the entire caregiving team needs to form a partnership having the best interest of the elderly people as their focal point while providing loving, appropriate care to enhance their quality of care, their quality of life and their happiness in the latter days of their lives which is coined as ‘healthy ageing’.

Cultiver la confiance : une piste face aux impasses thérapeutiques

The aftercare centre is a therapeutic tool which sometimes enables situations of therapeutic deadlock to be overcome. By focusing on the long term, the patient is able to undertake a sustainable transformation of their relationship with themselves and with others. However, this challenging work cannot be carried out without a foundation of respect for the caregiving teams with regard to their therapeutic capacity as well as trust in their partners.