Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a 'live discharge' from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.

Selection and visualisation of outcome measures for complex post-acute acquired brain injury rehabilitation interventions.

BACKGROUND: Outcome measurement challenges rehabilitation services to select tools that promote stakeholder engagement in measuring complex interventions. OBJECTIVES: To examine the suitability of outcome measures for complex post-acute acquired brain injury (ABI) rehabilitation interventions, report outcomes of a holistic, neuropsychological ABI rehabilitation program and propose a simple way of visualizing complex outcomes. METHODS: Patient/carer reported outcome measures (PROMS), experience measures (PREMS) and staff-rated measures were collected for consecutive admissions over 1 year to an 18-week holistic, neuropsychological rehabilitation programme at baseline, 18 weeks and 3- and 6-month follow-up. RESULTS: Engagement with outcome measurement was poorest for carers and at follow-up for all stakeholders. Dependence, abilities, adjustment, unmet needs, symptomatology including executive dysfunction, and self-reassurance showed improvements at 18 weeks. Adjustment, social participation, perceived health, symptomatology including dysexecutive difficulties, and anxiety were worse at baseline for those who did not complete rehabilitation, than those who did. A radar plot facilitated outcome visualization. CONCLUSIONS: Engagement with outcome measurement was best when time and support were provided. Supplementing patient- with staff-rated and attendance measures may explain missing data and help quantify healthcare needs. The MPAI4, EBIQ and DEX-R appeared suitable measures to evaluate outcomes and distinguish those completing and not completing neuropsychological rehabilitation.

[Barriers and Opportunities for Optimized Treatment of Late Life Depression]. / "Die vergessenen Patienten" ­ Barrieren und Chancen einer optimierten Behandlung depressiver Erkrankungen im Alter.

Objective: To identify barriers and opportunities of an optimized treatment of depression in late life in Germany. Methods: Qualitative analysis of 12 expert interviews. Results: Experts recognized much room for improvement regarding late life depression care. A number of barriers were identified on the part of individuals affected, caring relatives and physicians and other therapists, as well as at the structural level. Lack of knowledge as well as a number of structural barriers result in diagnostic deficits and limited or inadequate treatment. The potential for improvement is explored. Conclusions: Parallel initiatives at different levels of care are suggested to optimize the treatment of depressed elderly people in Germany.

Utilización de terapias complementarias y alternativas en niños con cáncer / Use of complementary and alternative therapies in children with cancer

Objetivo Determinar frecuencia, características y factores asociados al uso de terapias complementarias y alternativas en pacientes pediátricos en Colombia. Métodos Estudio transversal aplicando una encuesta a 398 cuidadores de pacientes pediátricos con cáncer en el Instituto Nacional de Cancerología en Bogotá, Colombia. Se registró información sociodemográfica y clínica, se evaluó el tipo de terapia, mecanismos de acción propuestos y patrones de uso. Con regresión logística se evaluaron factores asociados con el uso de estas terapias. Resultados Todos los casos correspondieron a terapias complementarias para curar o controlar síntomas de la enfermedad o del tratamiento. Un 81,9 % de los pacientes (IC95 %: 77,8% a 85,6 %) había recibido algún tipo de 81 diferentes modalidades utilizadas. Lo más utilizado fueron las terapias basadas biológicamente (especialmente jugos de frutos rojos). Quienes más frecuentemente usaron estas terapias fueron mujeres con mayor nivel educativo. El tiempo desde el diagnóstico y haber recibido tratamiento quirúrgico también se asoció con el uso de estas terapias. El mecanismo de acción más frecuentemente atribuido fue el refuerzo inmunológico. Conclusión Se encontró alta prevalencia de uso de terapias complementarias. Los pediatras deberían explorar en los pacientes el uso de estas terapias dado el potencial de interacciones con tratamientos farmacológicos o efectos adversos.(AU)

Objective To determine the frequency, characteristics and related factors for the use of complementary and alternative therapies in pediatric patients with cancer in a Colombian pediatric oncology department. Methods: Cross-sectional study consisting of a survey of 398 caregivers of pediatrics patients with cancer evaluated in the Instituto Nacional de Cancerología in Bogotá, Colombia. The survey collected sociodemographic and clinical information and evaluated the type of complementary and alternative therapies, mechanisms of action, and patterns of use of these treatments. Logistic regression was conducted to identify predictors of complementary and alternative therapies use. Results In this study complementary therapies were used not as a substitute but in addition to conventional treatments to cure or to control the disease or to treat symptoms. A total of 326 patients (81.9 %, CI95 %: 77.8 % to 85.6 %) had received some type of complementary therapy and 81 different types of therapies were used. The most common type of complementary therapy corresponded to the group of biologically based therapies (mainly berry juices). Female family caregivers with higher educational status were more likely to use complementary therapies. Time from diagnosis and having received surgical treatment were also associated with the use of therapies. Reinforcement of the immune system appears to be the most likely mechanism of action. Conclusion A high prevalence of use of complementary therapies was found in this sample. Pediatricians need to ask their patients about complementary and alternative therapy practices considering the potential for interactions with pharmacological treatments or adverse effects.(AU)

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)

Commentary on "a roadmap for the prevention of dementia II: Leon Thal symposium 2008." The megacommunity approach to Alzheimer's disease.

There are many groups and organizations across the government, private, and nonprofit sectors that are passionately engaged in the fight against Alzheimer's disease (AD), but they have constraints on their funding and scope and, therefore, cannot tackle the problem holistically. Addressing the complexities of this epidemic strategically will require the collective efforts of committed stakeholders. Individuals and organizations must work together to identify mutual interests and forge new relationships and partnerships. Through this network of stakeholders, known as a megacommunity, individual members can support and expand their objectives and impact through the combined knowledge and resources in the megacommunity network. Leaders Engaged on Alzheimer's Disease (LEAD) is an example of a megacommunity tackling the toughest issues facing AD patients and their families. LEAD is currently comprised of more that thirty individuals and organizations committed to sharing information and coordinating action across organizational boundaries.

Explaining family caregiver role strain following autologous blood and marrow transplantation.

This research project explores family caregiving processes during the first 100 days following autologous blood and marrow transplantation (ABMT). In this paper, we (1) explore patterns in caregiving, and ABMT recipient function early recovery from ABMT; (2) examine the relationships among caregiver demographics, relationship quality, preparedness, ABMT recipient function, predictability of caregiving, caregiver role strain and rewards of caregiving; and (3) examine the relative contribution of caregiver age, preparedness, relationship quality, and ABMT recipient function on caregiver role strain, and rewards of caregiving. Fifty-two family caregivers of ABMT recipients completed questionnaires about caregiving at hospital discharge, and again 2, 6, and 12 weeks following discharge. The amount of caregiving activities performed, and caregiver role strain, declined steadily from 2 weeks to 12 weeks of recovery. The caregiving situation was relatively predictable during recovery, and caregivers reported that caregiving was consistently rewarding. The caregiving activities rated as most difficult were those related to supporting recipients' emotional well-being. Strain from caregiving, although low, was explained by disruption in recipients' emotional and physical functioning, while caregiving rewards were explained by caregivers' preparedness for caregiving. Relationship quality, a significant predictor of strain in other samples, did not influence caregiving strain or rewards in this population. Caregiving processes delineated in studies of caregivers of persons with chronic illness are quite different from those described in this study. The acuity of the recipients' illness, the life threatening nature of the treatment, and the younger age of caregivers, and recipients, may underlie these differences.

Clinical trials in pediatric traumatic brain injury: unique challenges and potential responses.

In order to optimize pediatric traumatic brain injury translational and clinical research, scientific and ethical challenges need to be recognized and addressed. Having recently conducted a multisite phase II safety/feasibility trial of magnesium sulfate as a neuroprotective agent, we supplement our own experience by a mini review of similar studies, identifying challenges and possible responses from the perspective of families, investigators, funding agencies and society.

Valoración geriátrica en las unidades de larga estancia y residencias / Geriatric assessment in long term care units and nursing homes

La Atención de Larga Duración ("Long term care") es la prestada porcuidadores informales (familia, amigos..) o profesionales (serviciossanitarios y sociales)La Dependencia, asociada habitualmente a enfermedades crónicas,provoca a menudo, la necesidad de atención en Residencias o Hospitalesde Larga Estancia, cuando ya no es posible prestar la atenciónadecuada en el domicilio.En pacientes institucionalizados deben realizarse valoracionesestructuradas y sistematizadas de manera periódica (al menos unavez al año), utilizando Instrumentos de medición adecuados y validados,con la finalidad de identificar los problemas y elaborar el Plan deIntervención

Long Term care attention is provided by informal carers (family, friends..)or professionals (health and social services)The Dependence, usually associated to chronical diseases, often causes,the need of attention in Nursing homes or in Long Term CareHospitals, when it is not possible to give adequate attention at home.In institutionalized patients, structured and systematized valuationsshould be made periodically (at least once a year), using suitable andvalidated measuring tools, with the purpose of identify the problemsand elaborate the Intervention Plan

Nurses caring for the spirit: patients with cancer and family caregiver expectations.

PURPOSE/OBJECTIVES: To determine what patients with cancer and primary family caregivers expect from nurses with regard to having their spiritual needs addressed. RESEARCH APPROACH: Descriptive, cross-sectional, qualitative study using Miles and Huberman s approach to data reduction. SETTING: Outpatient and inpatient settings in a county hospital and a comprehensive cancer center, both located in a large, southwestern, metropolitan area. PARTICIPANTS: 28 African American and Euro-American adult patients with cancer and primary family caregivers were purposively selected to provide variation of experiences (e.g., religious backgrounds). METHODOLOGIC APPROACH: In-depth, semistructured, tape-recorded interviews conducted by the investigator. Analysis of transcribed interviews concurrently with data collection followed a process of data concentration, data display, and conclusion drawing. MAIN RESEARCH VARIABLES: Spiritual needs, spiritual care. FINDINGS: Informants identified nursing approaches for spiritual needs, including kindness and respect; talking and listening; prayer; connecting with symmetry, authenticity, and physical presence; quality temporal nursing care; and mobilizing religious or spiritual resources. To provide spiritual care, nurses must possess requisites of a personal, relational, or professional nature. CONCLUSIONS: Although some patients or caregivers do not want overt forms of spiritual care, others are eager for them. Many recognize nonreligious actions or attitudes that nurses can practice to care for spiritual needs. INTERPRETATION: Nurses must consider how they can address patient preconceptions and requisites for spiritual caregiving. Nurses may need to educate the public regarding their role as holistic and spiritual healthcare providers.

Primary health care and donor dependency: a case study of nongovernment assistance in Burkina Faso.

Primary health care assistance has become prominent in the rural development programs of many nongovernment organizations throughout sub-Saharan Africa. By emphasizing education and the promotion of new participatory health systems, most such programs aim to enhance the conditions of women as principal community care givers. Yet village-level health assistance in Africa is not without shortcomings. This is exemplified in a case study of two nongovernment programs in Burkina Faso's Namentenga Province. Although both programs have contributed to maternal health and infant survival, they have also induced new ties of donor dependency. This appears to present a conundrum for the sponsoring agencies which espouse self-reliance as a development assistance goal. In fact, however, where the intervention of nongovernment organizations helps to improve rural health, new dimensions of dependency may prove to be a positive first stage in the mobilization of women and the development of locally managed health systems. For this to be so, much is contingent on the capacity of these organizations to integrate local participation in their own planning and management processes, and to augment the professional status of indigenous health workers.

PIP: The relative effectiveness of foreign-funded nongovernmental organization (NGO) development programs in the province of Namentenga in east-central Burkina Faso was evaluated by studying two NGO programs. In 1971 the resident Catholic mission initiated a neighborhood women's health assistance program in Boulsa township entitled Sante Maternelle et Infantile (SMI), which by 1991 extended assistance to 14 villages. In 1978 a second NGO program started, the Plan de Parrainage International de Boulsa (PPIB), which provided village assistance, school construction, bore-hole well drilling, and agricultural extension. By 1991, 18 extension agents were working in 26 villages. The two NGOs provided infrastructure (first aid clinics, maternities, and midwife lodgings); education and consultation assisted by village health workers in growth monitoring and education (GME), nutrition, and prenatal care; and community health development (health committees and women's development committees to foster female participation in community affairs). The impact of the primary health care (PHC) programs was assessed during a 16-month period from late 1985 to early 1987 in 4 villages by visiting 873 households and conducting interviews with 99 married women 18-45 years old (7% of all married women). Most women had attended GME clinics and 73% of the households had charts to prove it. 145 (43%) of 334 children born to 79 women who had attended GME clinics had been delivered in village maternities; only 8 of 103 children born to 20 women who had not attended clinics had been delivered in maternities. Only 11 of 128 deceased infants under 5 years of age had been examined at these clinics. The maternities and clinics improved maternal health and child survival. People's knowledge about the causes of disease and community hygiene had improved, however, the treatment of diarrhea and malnutrition did not change much, and the new knowledge did not lead to behavioral change. In addition, the ineffectiveness of the village committees to support indigenous paraprofessionals indicates the dependency that has emerged from NGO intervention.