Pandemic Hastens Cleveland Clinic's Unified Well-Being Strategy.

SUMMARY: Across the healthcare landscape, the COVID-19 pandemic has been incredibly challenging. It also has been a catalyst for change. It has ignited a redesign of the US health system and presented opportunities in areas such as caregiver and patient communication, digital practice, telehealth and virtual care, and more. Notably, the pandemic also has shined a new light on caregiver well-being. As executive leaders of Cleveland Clinic's Caregiver Office, our top priority throughout the pandemic has been to support our caregivers professionally and personally-to help them be their best for themselves and for their fellow caregivers, our patients, our organization, and our communities. Today, Cleveland Clinic is realizing the profound impact of many of the strategies put in place during the pandemic and seeing how COVID-19 accelerated our organization's unified vision for caregiver well-being. This article offers insight into Cleveland Clinic's commitment to caregiver well-being, highlights actions we undertook during the pandemic, shares the resulting lessons we learned, and showcases how those lessons are shaping our future caregiver well-being strategy.

Supportive care and osteopathic medicine in pediatric oncology: perspectives of current oncology clinicians, caregivers, and patients.

BACKGROUND AND OBJECTIVE: Many children receiving chemotherapy struggle with therapy-induced side effects. To date, there has been no literature investigating the needs, knowledge, or implementation of osteopathic manipulative treatments (OMT) as a supportive care option in pediatric oncology. We hypothesized that pediatric oncology clinicians, caregivers, and patients have (a) limited knowledge of OMT and (b) dissatisfaction with current supportive care options and (c) would be interested in having OMT available during chemotherapy, once educated. METHODS: Participants included three cohorts: (1) children aged ≥ 9 years, diagnosed with cancer and actively receiving chemotherapy; (2) their caregivers; and (3) oncology clinicians at Nationwide Children's Hospital. Participants completed 1:1 semi-structured interviews, which were audio-recorded, transcribed, and analyzed for thematic content regarding their perception of supportive care measures and views on OMT. Quantitative data was summarized descriptively. RESULTS: A total of 60 participants completed the interview. Participants demonstrated limited awareness of osteopathic medicine; no participant had more than "some" knowledge of OMT. After education about OMT using a brief video, all clinicians, caregivers, and 95% of patients were receptive to OMT as a supportive care option. Major themes included the following: (a) patients have uncontrolled chemotherapy side effects, (b) improved supportive care options are desired, and (c) osteopathic medicine is a favorable supportive care adjunct. CONCLUSIONS: Pediatric oncology clinicians, caregivers, and patients reported a need for better management of chemotherapy-associated side effects and an interest in utilizing OMT. These findings support further investigation into the safety, feasibility, and efficacy of implementing OMT in the pediatric oncology clinical setting.

Process lessons from evaluating a combined continuity of carer and home birth scheme.

INTRODUCTION: Continuity of midwifery carer improves outcomes, but there is significant variation in how such schemes are implemented and evaluated cross-culturally. The Angus home birth scheme in Scotland incorporates continuity of carer throughout pregnancy, labor, birth, and the postnatal period. METHODS: Manual maternity case note review to evaluate the 80% continuity of carer and 3% planned home birth rate targets. RESULTS: Of 1466 women booking for maternity care, 69 joined the scheme. Forty-four had a planned home birth (3% overall), of whom seven were originally deemed ineligible. Of the 44, eight (18%) also achieved 80% continuity of carer with the primary midwife; by including a home birth team colleague, the continuity rate rose to 73%. Women whose care achieved home birth and continuity targets had lower deprivation scores. Eligibility issues, women's changing circumstances, and data recording lapses were complicating issues. CONCLUSIONS: Targets must be both feasible and meaningful and should be complemented by assessing a broad range of outcomes while viewing the scheme holistically. By expanding eligibility criteria, the home birth rate target was met; including input from a home birth team colleague in the calculation meant the continuity target was nearly met. With dedicated and competent staff, adequate resource and political support, and when considered in the round, the scheme's viability within local services was confirmed. Other generalizable learning points included the need to standardize definitions and data recording methods. Comparability across schemes helps grow the evidence base so that the links between processes and outcomes can be identified.

Music Playlists for People with Dementia: Trialing A Guide for Caregivers.

BACKGROUND: Music programs have the potential to provide an effective non-pharmacological tool for caregivers to reduce depression and agitation and increase quality of life in people with dementia. However, where such programs are not facilitated by a trained music therapist, caregivers need greater access to information about how to use music most effectively in response to key challenges to care, and how to pre-empt and manage adverse responses. OBJECTIVE: This study reports on the trial of a Guide for use of music with 45 people with dementia and their caregivers in residential care facilities and home-based care. METHODS: The study used a pre-post experimental design in which participants were randomly allocated to a treatment group or a waitlist control group. RESULTS: Improvements to quality of life were found in the experimental group over the 6-week period. Significant increases in Interest, Responsiveness, Initiation, Involvement, and Enjoyment were reported for individual listening sessions. CONCLUSION: The Guide can provide an effective protocol for caregivers to follow in selecting music to manage particular challenges to care, confirming the need for caregivers to be prepared to monitor and manage potential negative responses.

Healthcare providers' experiences in supporting community-living older adults to manage multiple chronic conditions: a qualitative study.

BACKGROUND: Living with multiple chronic conditions (MCC), the coexistence of two or more chronic conditions, is becoming more prevalent as the population ages. Primary care and home care providers play key roles in caring for older adults with MCC such as facilitating complex care decisions, shared decision-making, and access to community health and support services. While there is some research on the perceptions and experiences of these providers in caring for this population, much of this literature is focused specifically on family physicians. Little is known about the experiences of other primary care and home care providers from multiple disciplines who care for this vulnerable group. The purpose of this study was to explore the experiences of primary and home care healthcare providers in supporting the care of older adults with MCC living in the community, and identify ways of improving care delivery and outcomes for this group. METHODS: The study used an interpretive descriptive design. A total of 42 healthcare providers from two provinces in Canada (Ontario and Alberta) participated in individual semi-structured, face-to-face 60-min interviews. Participants represented diverse disciplines from primary care and home care settings. Inductive thematic analysis was used for data analysis. RESULTS: The experiences and recommendations of healthcare providers managing care for older adults with MCC were organized into six major themes: (1) managing complexity associated with MCC, (2) implementing person-centred care, (3), supporting caregivers, (4) using a team approach for holistic care delivery, (5) encountering challenges and rewards, and (6) recommending ways to address the challenges of the healthcare system. Healthcare providers identified the need for a more comprehensive, integrated system of care to improve the delivery of care and outcomes for older adults with MCC and their family caregivers. CONCLUSIONS: Study findings suggest that community-based healthcare providers are using many relevant and appropriate strategies to support older adults living with the complexity of MCC, such as implementing person-centred care, supporting caregivers, working collaboratively with other providers, and addressing social determinants of health. However, they also identified the need for a more comprehensive, integrated system of care.

Knowledge, attitude and practice towards dietary iron among patients with thalassemia and their caregivers in Peninsular Malaysia.

INTRODUCTION: Thalassemias are the most common human monogenic disorders in the world. Regular blood transfusion and increased intestinal absorption of iron among thalassemia patients will lead to iron overload, which will not only markedly decrease their life expectancy but also pose a heavy burden to the healthcare system. The objective of this study was to evaluate the level of knowledge, attitude and practice towards dietary iron among thalassemia patients and their caregivers. METHODS: An analytical cross-sectional study using purposive sampling method was conducted at eight thalassemia societies in Peninsular Malaysia. 260 respondents comprised of patients and caregivers were assessed with two separate sets of questionnaires. RESULTS: Knowledge on dietary iron among the respondents was unsatisfactory, despite them having good knowledge on thalassemia disorder. Female patients were found to have better dietary knowledge, attitude and practice compared to males. The percentage of caregivers with good attitude and good practice were significantly higher compared to adult patients. Caregivers with children on iron chelators were noted to have better dietary attitude and practice. Thalassemia knowledge and children on vitamins were found to be the predictors of dietary knowledge among the patients and caregivers respectively. CONCLUSION: The level of knowledge on dietary iron among the patients and caregivers was unsatisfactory in spite of their attitude and practice towards dietary iron were good. Effective delivery of dietary information to the patients and caregivers is essential to enable them to choose a healthy diet for their condition.

Development of a Brief Caregiver-centric Screening Tool to Identify Risk of Depression among Caregivers of Hospitalized Older Adults.

OBJECTIVES: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. DESIGN, SETTING AND PARTICIPANTS: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. MEASUREMENTS: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). RESULTS: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0-1 points), intermediate-risk (2-4 points), and high-risk (5-6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high- risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. CONCLUSIONS/IMPLICATIONS: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults' admission evaluation so that prompt intervention can be rendered to their at-risk caregivers.

Medication review plus person-centred care: a feasibility study of a pharmacy-health psychology dual intervention to improve care for people living with dementia.

BACKGROUND: "Behaviour that Challenges" is common in people living with dementia, resident in care homes and historically has been treated with anti-psychotics. However, such usage is associated with 1800 potentially avoidable deaths annually in the UK. This study investigated the feasibility of a full clinical trial of a specialist dementia care pharmacist medication review combined with a health psychology intervention for care staff to limit the use of psychotropics. This paper focuses on feasibility; including recruitment and retention, implementation of medication change recommendations and the experiences and expectations of care staff. METHODS: West Midlands care homes and individuals meeting the inclusion criteria (dementia diagnosis; medication for behaviour that challenges), or their personal consultee, were approached for consent. A specialist pharmacist reviewed medication. Care home staff received an educational behaviour change intervention in a three-hour session promoting person-centred care. Primary healthcare staff received a modified version of the training. The primary outcome measure was the Neuropsychiatric Inventory-Nursing Home version at 3 months. Other outcomes included quality of life, cognition, health economics and prescribed medication. A qualitative evaluation explored expectations and experiences of care staff. RESULTS: Five care homes and 34 of 108 eligible residents (31.5%) were recruited, against an original target of 45 residents across 6 care homes. Medication reviews were conducted for 29 study participants (85.3%) and the pharmacist recommended stopping or reviewing medication in 21 cases (72.4%). Of the recommendations made, 57.1% (12 of 21) were implemented, and implementation (discontinuation) took a mean of 98.4 days. In total, 164 care staff received training and 21 were interviewed. Care staff reported a positive experience of the intervention and post intervention adopting a more holistic patient-centred approach. CONCLUSIONS: The intervention contained two elements; staff training and medication review. It was feasible to implement the staff training, and the training appeared to increase the ability and confidence of care staff to manage behaviour that challenges without the need for medication. The medication review would require significant modification for full trial partly related to the relatively limited uptake of the recommendations made, and delay in implementation. TRIAL REGISTRATION: ISRCTN58330068 . Registered 15 October 2017. Retrospectively registered.

The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

BACKGROUND: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Combining Best Practices and Patient, Caregiver, and Healthcare Provider Perspectives for Late-Life Supportive Care: LifeCourse.

Healthcare systems seek effective ways to support and treat the growing number of individuals living with serious illness. The nature of these care episodes challenges delivery systems to attain proficiency in dealing with the multiplicity of chronic conditions in individuals and populations through understanding and attending to patients' medical and nonmedical aspects of health. This article describes LifeCourse, a healthcare approach that provides palliative care practices to patients with serious illness years prior to death.

Self-medication among the elderly in Iran: a content analysis study.

BACKGROUND: Self-medication is described as the use of drugs without a physician's prescription to treat self-recognized illness or symptoms, and an important health issue among the elderly. Despite the wide range of different definitions, recognizing all forms of self-medication among older adults, particularly, in developing countries, help healthcare professionals and providers to reduce harmful effects of self-medication. The purpose of this study is to describe the practice of self-medication and its related factors among elderly people in Iran based on the experiences of people who are involved in this phenomenon. METHODS: This qualitative study was conducted using content analysis. Purposive sampling was used to select the participants and continued until saturation. The participants were the elderly, their care-givers, physicians, and pharmacists. Data was collected using semi-structured interviews, and analysis was done using an inductive approach. The theory of planned behavior was used as a framework to explain the role of the emerged factors in the occurrence of self-medication behavior. RESULTS: Based on the expressed experiences of the participants, factors related to the practice of self- medication among the elderly in Iran fit in these 5 categories: "patient's attitudes towards disease, treatment, and physicians", "living with disease", "unfriendly environments", "enabling health system", and "influential others". CONCLUSIONS: Based on the results of this study, self-medication of the elderly in Iran has commonalities with many countries in regard to over-the-counter medications and complementary and alternative medicine; however, self-medication is also seen with drugs that require a prescription but can easily be obtained from pharmacies. Contributing factors, apart from the elderly themselves, include their families, caregivers, and social circle, the physical environment where they live, and the health system from which they receive services.

Fidelity scorecard: evaluation of a caregiver-delivered symptom management intervention.

AIM: To evaluate and quantify the intervention fidelity of a symptom management protocol through implementation of a scorecard, using an exemplar study of caregiver-delivered reflexology for people with breast cancer. BACKGROUND: Studies on caregiver-delivered symptom management interventions seldom include adequate information on protocol fidelity, contributing to potentially suboptimal provision of the therapeutic intervention, hindering reproducibility and generalizability of the results. DESIGN: Fidelity assessment of a 4-week intervention protocol in a randomized controlled trial (RCT) with data collection between 2012 - 2016. METHODS: The National Institutes of Health Behaviour Change Consortium (NIH-BCC) conceptual model for intervention fidelity guided the study. The five NIH-BCC fidelity elements are: (1) dose; (2) provider training; (3) intervention delivery; (4) intervention receipt; and (5) enactment. To illustrate the elements, an intervention protocol was deconstructed and each element quantified using a newly developed fidelity scorecard. RESULTS: Mean scores and frequency distributions were derived for the scorecard elements. For dose, the mean number of sessions was 4·4, 96% used the correct intervention duration and 29% had 4 weeks with at least one session. Provider training was achieved at 80% of the maximum score, intervention delivery was 96%, intervention receipt was 99% and enactment indicated moderate adoption at 3·8 sessions per patient. The sample mean score was 15·4 out of 16, indicating the high overall fidelity. CONCLUSION: Research findings that include description of how fidelity is both addressed and evaluated are necessary for clinical translation. Clinicians can confidently recommend symptom management strategies to patients and caregivers when fidelity standards are explicitly reported and measured.

Identifying Markers of Dignity-Conserving Care in Long-Term Care: A Modified Delphi Study.

Ensuring that people living in nursing homes (NHs) are afforded with dignity in their daily lives is an essential and humane concern. Promoting dignity-conserving care is fundamentally important. By nature, however, this care is all-encompassing and holistic, and from current knowledge it is challenging to create explicit strategies for measuring dignity-conserving care. In practice the majority of current NH indicators of quality care are derived from information that is routinely collected on NH residents using the RAI-Minimum Data Set (MDS). In this regard, issues that are more tangible to resident dignity such as being treated with respect, compassion, and having opportunities to engage with others are not adequately captured in current NH quality of care indicators. An initial set of markers was created by conducting an integrative literature review of existing markers and indicators of dignity in the NH setting. A modified Delphi process was used to prioritize essential dignity-conserving care markers for use by NH providers, based on factors such as the importance to fostering a culture of dignity, the impact it may have on the residents, and how achievable it is in practice. Through this consensus building technique, we were able to develop a comprehensive set of markers that capture the range and diversity of important dignity-conserving care strategies for use in NHs. The final 10 markers were judged as having high face validity by experts in the field and have explicit implications for enhancing the provision of daily dignified care to NH residents. These markers make an important addition to the traditional quality indicators used in the NH setting and as such, bridge an important gap in addressing the psychosocial and the less easily quantified needs of NH residents.

[Dying well seen in the light of self-transcendence and transition : two theories of care helpful to nurses]. / Le « bien mourir ¼ perçu dans une approche de l'auto-transcendance et de la transition : deux théories de soin utiles pour l'infirmière.

Accompanying a dying person up to and at the actual moment of death is a duty that often leaves carers at a loss. We shall show how far theoretical nursing knowledge can help practitioners who accompany the end of life by applying two theories of care : Reed's theory of self-transcendence and Meleis's theory of transition. Our interpretation of the theory of self-transcendence designates three points of reference in the concept of dying well. The first relates to the overtures prompted by the vulnerability that the context of dying inspires. The second concerns the capacity of the patient to summon up intrapersonal, interpersonal and transpersonal strategies, and the third considers the benefits when self-transcendence is achieved. The theory of transition similarly presents three points of reference. The first is based on informing the patient about palliative care and telling him or her the truth about the prognosis. The second relates to coordinating the interprofessional team that is looking after the dying person. The last criterion is that the palliative care should be started at a suitable moment. This makes it possible to educate a patient who wishes to die at home and thus create an environment favourable to the transition.

Diseño y validación de una escala para la medición de la dedicación al cuidado en personas cuidadoras de mayores dependientes (DeCuida) / Desing and validation of a scale to measure caregiving dedication in caregivers of dependent older people

OBJETIVO: El objetivo del presenta estudio es el desarrollo y validación de una escala para medir la dedicación al cuidado en personas cuidadoras de mayores dependientes, en la esfera de las actividades básicas de la vida diaria (ABVD). DISEÑO: Estudio descriptivo transversal. Emplazamiento: Atención primaria (comunidad autónoma de Andalucía, España). PARTICIPANTES: Muestra probabilística de 200 personas cuidadoras de familiares mayores dependientes de la comarca cordobesa del Alto Guadalquivir. MEDICIONES PRINCIPALES: Validación de contenido por expertos, validez de constructo (mediante análisis factorial exploratorio), validez divergente y fiabilidad (consistencia interna, estabilidad y concordancia interobservadores). RESULTADOS: El valor del alfa de Cronbach fue 0,86. El coeficiente de correlación intraclase para la fiabilidad test-retest fue de 0,96 y para la concordancia interobservadores fue de 0,88. Al dividir la muestra en 2 grupos en función del nivel de sobrecarga (presencia y ausencia), la puntuación de la escala fue significativamente diferente en cada grupo (p = 0,001). El análisis factorial reveló la existencia de un único factor que explicaba el 64% de la varianza. CONCLUSIONES: La escala desarrollada permite una adecuada medición de la dedicación al cuidado en la esfera de las ABVD en personas cuidadoras de mayores dependientes, ya que es un instrumento de fácil y rápida administración, que es bien aceptado por las personas cuidadoras, presenta adecuados resultados psicométricos y se ajusta a la frecuencia de dedicación, al tipo de necesidad atendida y al nivel de dependencia de cada necesidad

OBJECTIVE: To develop and validate a scale to measure caregiving dedication regarding activities of daily living in caregivers of dependent older people. DESIGN: Cross-sectional study. LOCATION: Primary Health Care (Andalusia, Spain). PARTICIPANTS: a probabilistic sample of 200 caregivers of older relatives from Córdoba, Spain. MAIN MEASUREMENTS: Content validation by experts, construct validity (by exploratory factor analysis), divergent validity and reliability (internal consistency, test-retest reliability and inter-observers reliability). RESULTS: Cronbach's alpha was 0.86. Intraclass Correlation Coefficient was 0.96 for test-retest reliability and 0.88 for inter-observers reliability. When the sample was divided in two groups according to perceived burden level (presence and absence), the perceived burden was significantly different in each group(P=.001). The factor analysis revealed one only factor that explained 64% of the variance. CONCLUSIONS: The scale allows a suitable measure of caregiving dedication regarding activities of daily living in caregivers of older people, because this scale allows a quickly, easy administration, is well accepted by caregivers, has acceptable psychometric results and includes the frequency of caregiving, the kind of attended need and the dependence level in each need

Influencia de la educación para el control del fósforo sérico realizada por enfermería a pacientes y a sus cuidadores principales / Influence of education provided by nurses to patients and their primary caregivers in monitoring serum phosphorus

Debido a la avanzada edad de la población, esta necesita, cada vez más, la figura de un cuidador principal que controle y se responsabilice de sus cuidados. Nuestro objetivo es evaluar la efectividad de la educación sanitaria a los pacientes y sus cuidadores principales en la disminución de fósforo sérico. Se realiza un estudio de 20 meses de duración con una muestra de 70 pacientes divididos en dos grupos; un grupo control que no recibe educación adicional y un grupo estudio que recibe la educación específica para el control del fósforo y su dieta; en este grupo se identifican los pacientes dependientes que requerirán de un cuidador principal, quien también recibirá educación. Para la identificación del grado de dependencia del paciente se utiliza el Test Delta. El 52.9% de nuestros pacientes son independientes; el 48.2%, presentan dependencia leve, y el 4.3%, una dependencia moderada. El análisis de los resultados pone de manifiesto una disminución significativa del nivel de fósforo sérico en el grupo estudio, consiguiendo que, el 21% de estos pacientes cuyo nivel de fósforo se encontraba por encima de 5.5 mg/dl, lo redujera hasta los niveles normales recomendados (3 - 5.5 mg/dl). Concluimos que la implicación del personal de enfermería tanto en la educación continua del paciente y de sus cuidadores es necesaria y fundamental para conseguir unos resultados clínicos adecuados (AU)

Due to the advanced age of the population, the figure of the primary caregiver to monitor and take responsibility for their care is most needed. The aim of study is to evaluate the effectiveness of health education to patients and their primary caregivers in decreasing serum phosphorus. A study of 20 months duration was carried out with a sample of 70 patients divided into two groups; a control group which received no additional education and a study group which receives specific education for phosphorus control and diet; in the latter group, dependent patients who required a primary caregiver were identified. These primary caregivers also received health education. Delta Test was used to identify the degree of dependency. Our study found that 52.9% of our patients were independent; 48.2% had mild dependence, and 4.3%, moderate dependence. The analysis of the results revealed a significant decrease in serum phosphorus level in the study group; obtaining that 21% of these patients whose phosphorus levels were above 5.5 mg / dl were reduced to the recommended normal levels (3 - 5.5 mg / dl). We can conclude that the involvement of nurses in patient education and their primary caregivers is necessary and fundamental to achieve adequate clinical outcomes (AU)

Cuidadores informales de personas con parkinson. Necesidades y redes de apoyo, una revisión bibliográfica / Needs and support networks of informal caregivers of people with parkinson´s disease: a literature review

Objetivo. Generar conocimiento sobre las necesidades de los cuidadores informales de las personas con la enfermedad de Parkinson y analizar la evidencia de las intervenciones de apoyo social para satisfacer estas necesidades. Contexto. El Parkinson es una enfermedad con alta prevalencia que causa una serie de necesidades físico-psico-socio-emocionales en el paciente y en su cuidador informal. La calidad de vida y bienestar del cuidador informal influye en el cuidado que ofrece al paciente. Sin embargo, sus necesidades no están claramente representadas en la literatura. Metodología. Se presenta una revisión bibliográfica no sistemática de la evidencia disponible en las bases de datos: Pubmed-Medline, PsycINFO, Cinahl, Cochrane Library, CUIDEN y BIREME, publicada en el período 2001-2011. Además, se ha realizado una búsqueda manual revisando las tablas de contenidos de los últimos cinco años en las revistas relevantes relacionadas con el tema de este trabajo y se ha usado la técnica de bola de nieve para buscar más referencias relacionadas. Resultados. Los cuidadores informales tienen gran cantidad de necesidades que la mayoría de las veces no cubren con el apoyo social que reciben. Las ayudas más demandadas por ellos son: el relevo de cuidado, ayuda económica, el apoyo socioemocional continuo y la coordinación del cuidado multidisciplinar. Precisamente, son las menos ofertadas por los profesionales. Conclusiones. El resultado de esta revisión evidencia la urgencia de la proposición del apoyo social por parte de los profesionales del ámbito sociosanitario que asegure el cuidado holístico y personalizado al paciente, promocionando al mismo tiempo la salud de los cuidadores, según sus necesidades (AU)

Objective: To develop knowledge about the needs of informal caregivers of people with Parkinson’s disease and analyze the evidence of social support interventions to meet these needs. Background: Parkinson’s disease is a highly prevalent disease that causes a range of physical-psycho-social-emotional needs in the patient and his/her informal caregiver. Although quality of life and wellbeing of informal caregivers affect the care they provide patients with, their needs are not clearly represented in the literature. Methods: A non systematic literature review of the evidence available in databases: PubMed, Medline, PsycINFO, CINAHL, Cochrane Library, BIREME and CUIDEN, published in the period 2001-2011. In addition, a manual search by reviewing the table of contents of the last 5 years in relevant journals related to the topic of this work and the snowballing technique have taken place. Results: Informal caregivers have lots of needs that are not covered by the social support they receive. Caregivers’ most demanded types of support are respite care, financial and socio-emotional support, and coordination of continued multidisciplinary care. Precisely, these are rarely offered by professionals. Conclusions: The results of this review evidence that health professionals must provide social support to ensure holistic and personalized care to patients, and also to ensure caregivers’ health as needed(AU)

Patient neglect in healthcare institutions: a systematic review and conceptual model.

BACKGROUND: Patient neglect is an issue of increasing public concern in Europe and North America, yet remains poorly understood. This is the first systematic review on the nature, frequency and causes of patient neglect as distinct from patient safety topics such as medical error. METHOD: The Pubmed, Science Direct, and Medline databases were searched in order to identify research studies investigating patient neglect. Ten articles and four government reports met the inclusion criteria of reporting primary data on the occurrence or causes of patient neglect. Qualitative and quantitative data extraction investigated (1) the definition of patient neglect, (2) the forms of behaviour associated with neglect, (3) the reported frequency of neglect, and (4) the causes of neglect. RESULTS: Patient neglect is found to have two aspects. First, procedure neglect, which refers to failures of healthcare staff to achieve objective standards of care. Second, caring neglect, which refers to behaviours that lead patients and observers to believe that staff have uncaring attitudes. The perceived frequency of neglectful behaviour varies by observer. Patients and their family members are more likely to report neglect than healthcare staff, and nurses are more likely to report on the neglectful behaviours of other nurses than on their own behaviour. The causes of patient neglect frequently relate to organisational factors (e.g. high workloads that constrain the behaviours of healthcare staff, burnout), and the relationship between carers and patients. CONCLUSION: A social psychology-based conceptual model is developed to explain the occurrence and nature of patient neglect. This model will facilitate investigations of i) differences between patients and healthcare staff in how they perceive neglect, ii) the association with patient neglect and health outcomes, iii) the relative importance of system and organisational factors in causing neglect, and iv) the design of interventions and health policy to reduce patient neglect.

Traditional healers and provision of mental health services in cosmopolitan informal settlements in Nairobi, Kenya.

OBJECTIVE: The study aimed to investigate the types of mental illnesses treated by traditional healers, and their methods of identifying and treating mental illnesses in their patients. METHOD: In urban informal settlements of Kibera, Kangemi and Kawangware in Nairobi, Kenya, we used opportunistic sampling until the required number of traditional healers was reached, trying as much as possible to represent the different communities of Kenya. Focus group discussions were held with traditional healers in each site and later an in-depth interview was conducted with each traditional healer. An in-depth interview with each patient of the traditional healer was conducted and thereafter the MINIPLUS was administered to check the mental illness diagnoses arrived at or missed by the traditional healers. Quantitative analysis was performed using SPSS while focus group discussions and in-depth interviews were analysed for emerging themes. RESULTS: Traditional healers are consulted for mental disorders by members of the community. They are able to recognize some mental disorders, particularly those relating to psychosis. However, they are limited especially for common mental disorders. CONCLUSION: There is a need to educate healers on how to recognize different types of mental disorders and make referrals when patients are not responding to their treatments.

La verdadera eficiencia de las Unidades de Memoria. ¿Qué falla? / Alzheimer disease and the delay of its diagnosis

Introducción: El deterioro cognitivo es un problema de salud pública extraordinariamente prevalente en la población general. Las Unidades de Memoria son necesarias dada la necesidad de llevar a cabo una aproximación holística tanto a pacientes como a cuidadores. Sin embargo, los datos disponibles son controvertidos tanto respecto a la demora en el diagnóstico como al tratamiento de nuestros pacientes. Pacientes y métodos: Llevamos a cabo un estudio epidemiológico retrospectivo en la Unidad de Estudio de la Cognición y la Conducta, en el Servicio de Neurología del Hospital Clínico San Carlos de Madrid. Se revisaron 620 historias clínicas y se seleccionaron aquellos pacientes con enfermedad de Alzheimer (EA) según criterios NINCSADRDA, desde 2008 a 2011. Se analizaron variables como la edad, el sexo, la dominancia manual, el nivel educativo, la presencia de un cuidador, GDS (Global Deterioration Scale) y meses transcurridos desde los primeros síntomas hasta el diagnóstico. El análisis estadístico se llevó a cabo mediante SPSS versión 19. Describimos la correlación entre variables como la edad, el sexo, el nivel educativo y la presencia de un cuidador con el GDS y los meses de demora diagnóstica. Resultados: Evaluamos 229 personas con EA (67,7 % mujeres, 32,3 % hombres). La distribución de GDS fue: GDS 4: 45,4 %; GDS 5: 28,4 %; GDS 6: 21,0 %; GDS 7: 5,2 %. La mediana de edad fue de 81 años (hombres, 80; mujeres, 81). La mediana de nivel educativo fue de 5 años (hombres, 7; mujeres, 5).El 87,8 % tenían un cuidador (GDS 4: 35,7 %, GDS 5: 67,9 %, GDS 6: 96,4 %, GDS7: 100 %). La mediana de meses de demora diagnóstica fue de 36 en hombres y de 30 en mujeres (GDS 4: 24, GDS 5: 36, GDS 6: 48 y GDS 7: 51 meses). Teniendo en cuenta la situación social, la mediana de meses de demora diagnóstica fue de 24 en aquellos pacientes que vivían solos y de 36 en pacientes con cuidador. No hubo diferencias entre personas con más de 6 años de nivel educativo o con menos de 6 (mediana de meses: 36, en ambos casos). Con clu - siones: Las Unidades de Memoria son necesarias para la realización de un diagnóstico precoz y el inicio de un tratamiento óptimo. Sin embargo, hoy en día existe un gran retraso en el área a la hora de poder llevar a cabo estos objetivos. El diagnóstico de EA se realiza tarde en los hombres y en pacientes con mejor soporte social en nuestro medio(AU)

Background: Cognitive impairment is a prevalent public health problem in general population. Memory Clinics are necessary in order to implement a holistic approach to patients and caregivers. However, data report many controversial aspects about the delay of diagnosis and treatment of our patients. Methods: retrospective epidemiological study was carried out. We reviewed 620 medical histories selecting those patients diagnosed of Alzheimer disease (AD) (NINCS-ADRDA criteria) in BCU-HCSC from 2008 to 2011. We analyzed age, sex, handness, educational level, caregiver, GDS and time (months) from first symptoms till diagnosis. We made a statistical analysis using SPSS 19 version. We describe the correlation between factors like age, sex, educational level and caregiver presence with GDS and months from first symptoms at the time of diagnosis. Results:We evaluated 229 AD (67.7% women, 32.3 % men). The distribution of GDS score was: GDS 4: 45.4 %, GDS 5: 28.4 %, GDS 6: 21.0 %, GDS 7: 5.2 %. The median age was 81(men 80, women 81) The median of educational level was 5 years (men 7, women 5). 87.8 % had a caregiver (GDS 4: 35.7 %, GDS 5: 67.9 %, GDS 6: 96.4%, GDS7: 100 %). The median of months from first symptoms to diagnosis was 36 in men and 30 in women (GDS4: 24, GDS 5: 36, GDS 6: 48 and GDS 7: 51 months). Regarding the social situation, the median of months from first symptoms till diagnosis was 24 for patients who live alone and 36 for patients with caregiver. There was no diference between people with more than 6 years of educational level and less of six years (median of 36 months in both cases). Conclusions: Memory clinics are necessary in order to make an early diagnosis and implement an optimal treatment for AD patients. However, nowadays there is a great delay in our area in order to make an optimal medical approach of these patients. Alzheimer diagnosis is made later in men and patients with better social support(AU)