Indiana University-Purdue University Indianapolis (IUPUI) / Mindfulness-based interventions (MBIs) have demonstrated efficacy in reducing symptoms in survivors of early-stage cancer and have shown promise in adults with advanced cancer and their family caregivers. These interventions may be especially helpful for coping with advanced cancer because acceptance and a greater focus on present-moment experiences are central to the adjustment process. Mindfulness may be a potential mechanism underlying MBI’s health effects, yet suboptimal assessment of mindfulness hinders examination of this hypothesis. Widely used self-report measures of mindfulness require participants to have high self-awareness and comprehend a complex skill and show limited responsiveness to MBIs. Behavioral assessment of mindfulness may address the limitations of self-report measures. The goal of the current study was to obtain preliminary evidence of the validity of a behavioral measure of mindfulness, Levinson and colleagues’ breath counting task, and its responsiveness to MBI among patients and caregivers coping with advanced cancer. Fifty-five patient-caregiver dyads were recruited from a university hospital and community clinics in Indiana. Dyads were randomized to either a 6-week MBI or a usual care control condition. Measures were administered at baseline prior to intervention (week 0), at the end of the 6-week intervention period (week 6), and 1-month post-intervention (week 10). Measures included the breath counting task, self-reported mindfulness, avoidant coping, and distress. Linear mixed modeling was used to determine whether the MEANING intervention led to increased behavioral and self-reported mindfulness compared to the usual care group. Caregivers in the MEANING condition showed improved behavioral mindfulness relative to caregivers in usual care, whereas patients in both the MEANING and usual care conditions showed relatively stable behavioral mindfulness over time. Additionally, there was no evidence that the MEANING intervention impacted behavioral mindfulness to a greater extent than self-reported mindfulness. To further examine the behavioral mindfulness measure’s validity, its relations with self-reported mindfulness, avoidant coping, and distress were examined at all time points. For both patients and caregivers, correlations between behavioral and self-reported mindfulness were small or nearly zero and were not uniformly positive. In the MEANING condition, correlations showed mostly small changes over time, and in the control condition, correlations generally showed little change over time. In addition, for patients and caregivers, most correlations between behavioral mindfulness and distress and avoidant coping were approaching zero or small. Results support the feasibility of the breath counting task in adults with advanced cancer and their caregivers, but provide limited support for its validity. The task warrants further evaluation in populations coping with chronic illness.

In early 2014, 3 West African states of Guinea, Liberia, and Sierra Leone made news headlines when Ebola virus disease (EVD) ravaged the sub-region. The Liberian government was ill-equipped to efficiently contain EVD outbreak due to inadequate training for hospitals and healthcare workers. The government's mandatory cremation policies and the banning of public gatherings significantly contributed to the spread of EVD. EVD infected 10,666 and 4,808 died from the disease in the first 6 months of the epidemic. Using Bandura's Social Cognitive Theory (SCT) as the theoretical framework, the purpose of this case study research was to examine the social, economic, and policy factors that contributed to the spread of EVD in the city of Monrovia, Liberia. Utilizing snowball sampling to identify participants, data were collected through in-depth interviews with 30 participants that included 10 EVD survivors, 10 family caregivers, 2 government officials, 4 nongovernmental organization staff, 2 academicians, and 2 members of the media. All data were inductively coded and analyzed using Braun and Clarke's thematic analysis procedure. Two key themes were identified through data analysis. First, participants noted that a better understanding of cultural traditions may have created opportunities for intervention that prevented unnecessary exposure to the virus. Second, survivors and caregivers experienced a 'hope for the best, but expect the worst' mentality throughout the experience that guided faith. The positive social change implications stemming include recommendations to the government of Monrovia to implement culturally sensitive policies related to pandemic containment, including training of healthcare workers and the public in the event of disease outbreak.

No description available.

Bakgrund: Huntingtons sjukdom (HS) är en neurologisk sjukdom som är genetiskt ärftlig och drabbar både kvinnor och män i lika stor utsträckning. Sjukdomen angriper nervcellerna i hjärnan som styr muskelregleringen, vilket leder till ofrivilliga rörelser. Kognitiv påverkan är ett annat symtom, liksom att talet och andningen påverkas. HS är en fortskridande sjukdom och indelas i olika faser. I den sista fasen är den drabbade helt beroende av andra. Sjukdomen brukar kallas för en anhörigsjukdom på grund av att det är de anhöriga som ofta intar vårdrollen till personen med HS. Syfte: Syftet var att beskriva hur anhörigvårdare till personer med Huntingtons sjukdom upplever sin livssituation, samt att beskriva de inkluderade vetenskapliga artiklarnas undersökningsgrupp. Metod: En beskrivande litteraturstudie baserad på tio vetenskapliga artiklar med kvalitativ ansats. Databaserna som användes till litteratursökningen var Cinahl och PsycINFO. Huvudresultat: Anhörigvårdare till personer med Huntingtons sjukdom beskrev en känslomässig stress som ofta ledde till depression och isolering. Deras liv blev åsidosatta då vårdandet upptog det mesta av deras tid samt att de kände sig ensamma i sin situation. Rädslan att själv drabbas var överhängande. Oförståelse och okunskap mötte dem ofta på vägen, både från sjukvårdspersonal och omgivning. Att erhålla stöd från familj, vänner och stödgrupper var betydelsefullt och önskvärt. Slutsatser: Anhörigvårdarna upplevde en känslomässig påfrestning genom vårdandet av sin familjemedlem med Huntingtons sjukdom. Sjuksköterskor bör ta lärdom av deras upplevelser för att förbättra vårdarbetet och bemötandet gentemot anhörigvårdarna. / Background: Huntington’s disease (HD) is a neurologic disease that’s genetic hereditary and can affect both women and men equally. The disease infect nerve cells in the brain that controls muscle regulation, leading to involuntary movements. Cognitive loss is another symptom, as well as influenced speech and breathing. HD is a progressive disease and is divided into various phases. In the last phase the victim is completely dependent on others. The disease is called a relative’s disease because the relative often takes the care role to the person with HD. Purpose: The aim of this study was to describe how family caregivers to persons with Huntington’s disease experience their situation in life. Furthermore to describe the included scientific articles study group. Method: A descriptive literature study based on ten scientific articles with qualitative approach. The databases used for the literature research were Cinahl and PsycINFO. Main results: Family carers of people with Huntington's disease described an emotional stress that often led to depression and isolation. Their lives were sidelined while caring occupied most of their time and they often felt alone in their situation. The fear of being affected themselves by the disease was imminent. Incomprehension and ignorance were common, both from the medical staff and the surroundings. Obtaining support from family, friends and support groups were significant and desirable. Conclusion:  Family carers experienced an emotional strain while caring for their family member with Huntington's disease. Nurses should learn from their experiences to improve nursing care and treatment against family carers.

Det finns idag i Sverige många personer som har drabbats av en demenssjukdom. Att drabbas av demenssjukdom påverkar hela familjen och de närstående får ofta dra ett tungt lass vid vården av den sjuke. Många närstående sliter dygnet runt och löper därför stor risk att drabbas av hög stressbelastning och depression som följd. Demenssjukdom kan delas in i olika typer så som frontotemporal demens, Alzheimers sjukdom, vaskulärdemens. Olika typer av demens ger olika symtom men gemensamt är att de alla ger en kognitiv och känslomässig påverkan med bland annat nedsatt minnesfunktion, rastlöshet och oro. Syftet med studien var att undersöka vilka behov närstående som vårdar en demenssjuk i hemmet kan ha för att som sjuksköterska kunna stödja på bästa sätt. I denna studie har det använts elva artiklar varav sex är kvalitativa och tre kvantitativa samt två artiklar som var blandstudier med både kvalitativa och kvantitativa inslag. Analysen av materialet resulterade i två huvudkategorier vilka är kunskap om sjukdomen och kunskap om stöd som kan erbjudas, samt sex underkategorier. Resultatet visar att närstående har ett stort behov av utbildning och information, vilket de i dag inte tycker att de får tillräckligt av. De behöver dels kunskap om sjukdomen för att kunna förstå och ge en god vård, samt kunskap om sjukdomens utveckling för att kunna planera för framtiden. Det visar sig också att många närstående inte får tillräckligt information om hur de skall få kontakt med olika instanser, samt hur de kan söka olika stödåtgärder så som korttidsplats, dagverksamhet och avlösning i hemmet. För att närstående skall orka sköta den dagliga vården av den sjuke är det viktigt att han eller hon får tid att ta hand om sig själv. Som sjuksköterskor är det viktigt att ha en bra utbildning och en god förståelse för hur närstående och sjuka upplever sjukdomen, för att kunna ge en korrekt information samt att kunna stödja på bästa sätt.

An individual with advanced cancer moves through his or her illness trajectory engaged in an ongoing process of negotiation with the health care system, caregivers, and family members. The ability to maintain control is a key principle upheld in western society, but it may be difficult to do so if cognitive or physical decline occurs during the palliative phase of advanced cancer. Cognitive decline in progressive dementias such as Alzheimers disease or AIDS Dementia Complex is often gradual, allowing such individuals and their family members time to reassign responsibilities for illness management that protect the sense of control of the ill family member. When the onset of cognitive decline occurs more quickly, as is often the case in advanced cancer, ill individuals and their family members may not have the luxury of time to incorporate a transition in responsibilities for illness management into their collective decision-making process, leading to a sense on the part of the person with advanced cancer that he or she has lost control. Current understanding of this transition is limited, and thus the qualitative, grounded theory study, Decision-Making in Family Dyads in the Context of Advanced Cancer was conducted. Advanced cancer patients (n = 5), family caregivers (n = 3), and bereaved caregivers (n = 9) from palliative home care settings in Ontario were recruited for the study. Purposive and theoretical sampling of participants occurred until saturation was reached. Data collection, coding, and analysis occurred simultaneously. Results indicated that family caregivers who tried to fulfill their dying family members wishes often did so at the expense of their own health or finances. The core category Covering captured the strategies caregivers used to enable their family members to die in the manner of his or her choosing. The basic social process Dancing on the Stairs chronicled the stages of the patient-caregiver relationship as they navigated through the grey areas of decision-making in their final months together. The findings may assist health care personnel striving to help individuals with advanced cancer and their family caregivers maintain a sense of control during the palliative phase of an illness.

No description available.

No description available.

No description available.

Background: Individuals with intellectual and/or developmental disabilities (IDD) are experiencing longer life expectancies with the majority requiring the ongoing support of family caregivers into adulthood. Medicaid is the primary funding source for supports and services for adults with IDD. Growing Medicaid expenditures and goals to improve quality of care are driving more states to move their Medicaid fee-for-service programs into a managed care model. The stated goals of Medicaid managed long-term services and supports (MLTSS) are to improve care coordination and access to care while controlling costs, but the evidence regarding these outcomes is limited and mixed. Given the level of uncertainty about MLTSS for adults with IDD and their family caregivers, best practices recommendations have been produced by the federal government and advocacy agencies to help guide future MLTSS implementation efforts. These best practice recommendations combined with the continued expansion of MLTSS in the states, provided an opportunity to further explore implementation of MLTSS to inform both policy and practice. One state which recently reformed their Medicaid program to MLTSS and which has been referred to as a bellwether state is Kansas. The MLTSS program in Kansas, titled “KanCare”, is the first for adults with IDD to integrate across health, behavioral health, and LTSS while also contracting through three private-for-profit managed care organizations (MCOs). Aims: The objective of this study was to describe the current implementation of MLTSS for adults with IDD and their family caregivers in one state, Kansas. Study aims were as follows: 1) To understand the rationale behind and what actually happened with MLTSS implementation for adults with IDD in Kansas; 2) To understand how service coordination providers and family caregivers perceived care coordination and access to services for adults with IDD in MLTSS; 3) To understand how family caregivers and their roles were recognized in MLTSS for adults with IDD. Methods: A single case embedded design case study approach was used with in-depth semi-structured interviews completed with state/regional level representatives (N=13), MLTSS service coordination providers (N=7), and family caregivers of adults with IDD (N=11). Data collection and analysis were guided by the unified theory of family quality of life (FQOL) and Bronfenbrenner’s ecological model. The framework method was used to structure the data analysis process. Member checking was completed to ensure accuracy of results. Findings: Regarding aim one, respondents identified reducing costs and improving care quality as the rationale behind MLTSS, but these were outcomes not yet realized given the early stages of implementation. At the time of this study, the Managed Care Organizations (MCOs) were continuing to work on expanding provider networks and to provide additional services to address health disparities amongst individuals with IDD. Study participants identified the importance of adequate planning and stakeholder engagement to reduce confusion and fear when transitioning into MLTSS. Addressing aim two, timely and accessible consumer education, clear care coordination processes, and provider network adequacy were identified as important to influence the challenges experienced to date in care coordination and access to services. Regarding aim three, participants acknowledged the important role of family caregivers. At the current stage of the KanCare implementation, participants reported lack of formal processes for family caregiver assessment and a need for more proactive family support services planning. Conclusion: Lessons learned from this implementation experience include the importance of having long planning timelines and including stakeholder feedback into the design of MLTSS programs. Care coordination holds promise to better integrate care, but more research is needed to understand best practices for the provision of care coordination in MLTSS. In order to address access to services, MLTSS programs will need to work and build provider capacity and provider networks. MLTSS programs will also need to formally recognize the role of family caregivers by incorporating the use of family caregiver assessments to proactively plan for support needs.