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https://www.readbyqxmd.com/read/29776973/challenges-in-end-of-life-dementia-care
#1
REVIEW
Anne A Fetherston, Grace Rowley, Charlotte L Allan
Dementia is a chronic, progressive disease that is now much more widely recognised and treated. Patients with dementia may require palliative care when they reach the end stage of their illness, or they may have mild-moderate cognitive symptoms comorbid with a life-limiting illness. The variety of presentations necessitates a highly individual approach to care planning, and patients should be encouraged to set their own goals and contribute to advanced care planning where possible. Assessment and management of distressing symptoms at the end of life can be greatly helped by a detailed knowledge of the individuals' prior wishes, interdisciplinary communication and recognition of changes in presentation that may result from new symptoms, for example, onset of pain, nutritional deficits and infection...
May 18, 2018: Evidence-based Mental Health
https://www.readbyqxmd.com/read/29767578/-death-is-difficult-in-any-language-a-qualitative-study-of-palliative-care-professionals-experiences-when-providing-end-of-life-care-to-patients-from-culturally-and-linguistically-diverse-backgrounds
#2
Anna Green, Natalia Jerzmanowska, Marguerite Green, Elizabeth A Lobb
BACKGROUND: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. AIM: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture...
May 1, 2018: Palliative Medicine
https://www.readbyqxmd.com/read/29761752/addressing-cancer-patient-and-caregiver-role-transitions-during-home-hospice-nursing-care
#3
Janella Hudson, Maija Reblin, Margaret F Clayton, Lee Ellington
OBJECTIVE: Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life...
May 15, 2018: Palliative & Supportive Care
https://www.readbyqxmd.com/read/29759980/understanding-axon-guidance-are-we-nearly-there-yet
#4
REVIEW
Esther T Stoeckli
During nervous system development, neurons extend axons to reach their targets and form functional circuits. The faulty assembly or disintegration of such circuits results in disorders of the nervous system. Thus, understanding the molecular mechanisms that guide axons and lead to neural circuit formation is of interest not only to developmental neuroscientists but also for a better comprehension of neural disorders. Recent studies have demonstrated how crosstalk between different families of guidance receptors can regulate axonal navigation at choice points, and how changes in growth cone behaviour at intermediate targets require changes in the surface expression of receptors...
May 14, 2018: Development
https://www.readbyqxmd.com/read/29755917/sharing-is-caring-minimizing-the-disruption-with-palliative-care
#5
EDITORIAL
Abd Moain Abu Dabrh, Robert P Shannon, Richard J Presutti
There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority...
March 13, 2018: Curēus
https://www.readbyqxmd.com/read/29750617/no-rest-for-the-women-understanding-the-impact-of-on-call-work-for-women-in-the-emergency-services
#6
Sarah M Jay, Jessica L Paterson, Brad Aisbett, Sally A Ferguson
BACKGROUND: The unpredictable, "on-call" component of the emergency services (ES) may be difficult to navigate in the context of domestic and work responsibilities, and especially difficult for women, given they tend to take on a greater household burden than do men. Our aim was to understand women's experiences in the ES, particularly the impact of being on-call and related coping strategies. METHODS: Twenty-four women were recruited from two ES agencies in Australia...
May 11, 2018: Chronobiology International
https://www.readbyqxmd.com/read/29733982/the-giving-parents-support-study-a-randomized-clinical-trial-of-a-parent-navigator-intervention-to-improve-outcomes-after-neonatal-intensive-care-unit-discharge
#7
Cara L Carty, Lamia M Soghier, Katherine I Kritikos, Lisa K Tuchman, Michelle Jiggetts, Penny Glass, Randi Streisand, Karen R Fratantoni
Parents of infants hospitalized in a neonatal intensive care unit (NICU) experience increased anxiety and stress, which may persist after discharge. The rationale and design of a randomized clinical trial assessing the impact of a 1-year, post-discharge, peer support intervention (parent navigation) on parental mental health and infant health care utilization is described. Qualitative methods guided the adaptation of an existing parent support program to target emotional and resource-related needs of NICU families...
May 4, 2018: Contemporary Clinical Trials
https://www.readbyqxmd.com/read/29728347/the-development-of-delta-using-agile-to-develop-a-decision-aid-for-pediatric-oncology-clinical-trial-enrollment
#8
Eden G Robertson, Claire E Wakefield, Richard J Cohn, Tracey O'Brien, David S Ziegler, Joanna E Fardell
BACKGROUND: The internet is increasingly being used to disseminate health information. Given the complexity of pediatric oncology clinical trials, we developed Delta, a Web-based decision aid to support families deciding whether or not to enroll their child with cancer in a clinical trial. OBJECTIVE: This paper details the Agile development process of Delta and user testing results of Delta. METHODS: Development was iterative and involved 5 main stages: a requirements analysis, planning, design, development, and user testing...
May 4, 2018: JMIR Research Protocols
https://www.readbyqxmd.com/read/29728097/understanding-the-ups-and-downs-of-living-well-the-voices-of-people-experiencing-early-mental-health-recovery
#9
Nicola Hancock, Jennifer Smith-Merry, Glenda Jessup, Sarah Wayland, Allison Kokany
BACKGROUND: The aim of this study was to better understand early-stage mental health recovery experiences of people living with severe and persistent mental illness and complex needs. METHODS: Semi-structured, in-depth interviews were conducted with 13 people engaged in an Australian program specifically designed for people facing complex barriers to their recovery. Interview data were analysed thematically using constant comparative methods. RESULTS: Participants described engaging with seven interconnecting aspects of early recovery: (1) engaging with the challenge of recovery; (2) struggling for a secure and stable footing; (3) grieving for what was and what could have been; (4) seeking and finding hope; (5) navigating complex relationships; (6) connecting with formal and informal support, and finally, (7) juggling a complexity of health issues...
May 4, 2018: BMC Psychiatry
https://www.readbyqxmd.com/read/29724177/effectiveness-of-informational-decision-aids-and-a-live-donor-financial-assistance-program-on-pursuit-of-live-kidney-transplants-in-african-american-hemodialysis-patients
#10
L Ebony Boulware, Patti L Ephraim, Jessica Ameling, LaPricia Lewis-Boyer, Hamid Rabb, Raquel C Greer, Deidra C Crews, Bernard G Jaar, Priscilla Auguste, Tanjala S Purnell, Julio A Lamprea-Monteleagre, Tope Olufade, Luis Gimenez, Courtney Cook, Tiffany Campbell, Ashley Woodall, Hema Ramamurthi, Cleomontina A Davenport, Kingshuk Roy Choudhury, Matthew R Weir, Donna S Hanes, Nae-Yuh Wang, Helene Vilme, Neil R Powe
BACKGROUND: African Americans have persistently poor access to living donor kidney transplants (LDKT). We conducted a small randomized trial to provide preliminary evidence of the effect of informational decision support and donor financial assistance interventions on African American hemodialysis patients' pursuit of LDKT. METHODS: Study participants were randomly assigned to receive (1) Usual Care; (2) the Providing Resources to Enhance African American Patients' Readiness to Make Decisions about Kidney Disease (PREPARED); or (3) PREPARED plus a living kidney donor financial assistance program...
May 3, 2018: BMC Nephrology
https://www.readbyqxmd.com/read/29716586/access-to-health-care-for-uninsured-latina-immigrants-in-south-carolina
#11
John S Luque, Grace Soulen, Caroline B Davila, Kathleen Cartmell
BACKGROUND: South Carolina is considered a "new destination" state for Latino immigrants. Language barriers, transportation difficulties, low socioeconomic status, inflexible work schedules, different cultural norms, and anxiety and fear related to the current anti-immigrant political climate all negatively impact Latino immigrants' frequency of contact with the health care system, and consequently they suffer poor health outcomes. The study objective was to explore uninsured Latina immigrant women's access to health care and alternative treatment strategies in coastal South Carolina...
May 2, 2018: BMC Health Services Research
https://www.readbyqxmd.com/read/29703226/individualised-short-term-therapy-for-adolescents-impaired-by-attention-deficit-hyperactivity-disorder-despite-previous-routine-care-treatment-escaadol-study-protocol-of-a-randomised-controlled-trial-within-the-consortium-escalife
#12
Julia Geissler, Thomas Jans, Tobias Banaschewski, Katja Becker, Tobias Renner, Daniel Brandeis, Manfred Döpfner, Christina Dose, Christopher Hautmann, Martin Holtmann, Carolin Jenkner, Sabina Millenet, Marcel Romanos
BACKGROUND: Despite the high persistence rate of attention-deficit/hyperactivity disorder (ADHD) throughout the lifespan, there is a considerable gap in knowledge regarding effective treatment strategies for adolescents with ADHD. This group in particular often shows substantial psychosocial impairment, low compliance and insufficient response to psychopharmacological interventions. Effective and feasible treatments should further consider the developmental shift in ADHD symptoms, comorbidity and psychosocial adversity as well as family dysfunction...
April 27, 2018: Trials
https://www.readbyqxmd.com/read/29691974/aboriginal-experiences-of-cancer-and-care-coordination-lessons-from-the-cancer-data-and-aboriginal-disparities-candad-narratives
#13
Rachel Reilly, Jasmine Micklem, Paul Yerrell, David Banham, Kim Morey, Janet Stajic, Marion Eckert, Monica Lawrence, Harold B Stewart, Alex Brown
BACKGROUND: Aboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes...
April 24, 2018: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/29691111/helping-patients-help-themselves-supporting-the-healthcare-journey
#14
Moriah E Ellen, Ruth Shach, Ran D Balicer
Patients often feel lost when navigating the health care system, and poor care coordination leads to negative patient outcomes, consumes resources and makes diseases more difficult to treat. Patients and citizens have become eager to take health care decision making into their own hands. To this end, solutions have been proposed which assist patients by providing them with more information and enabling them to take a more active role in their care. These include enlisting a patient navigator, consumer engagement, process mapping, decision aids, and clinical pathways...
April 14, 2018: Patient Education and Counseling
https://www.readbyqxmd.com/read/29690340/the-sea-lice-copepoda-caligidae-of-moreton-bay-queensland-australia-with-descriptions-of-thirteen-new-species
#15
Geoff Boxshall
Fifty species of sea lice, members of the family Caligidae, were collected from the marine fishes of Moreton Bay, Queensland, during two workshops held in 2016. Only 21 of these species had previously been reported from Australian waters: of the remaining 29 species, 13 are new to science and another 16 are recorded from Australia for the first time. An illustrated differential diagnosis is presented for well known species; but for new or poorly known species a full description is provided. The 13 new species are: Anuretes amplus sp...
March 18, 2018: Zootaxa
https://www.readbyqxmd.com/read/29676493/the-physical-environment-and-patients-activities-and-care-a-comparative-case-study-at-three-newly-built-stroke-units
#16
Anna Anåker, Lena Von Koch, Christina Sjöstrand, Ann Heylighen, Marie Elf
AIM: To explore and compare the impact of the physical environment on patients' activities and care at three newly built stroke units. BACKGROUND: Receiving care in a stroke unit instead of in a general ward reduces the odds of death, dependency and institutionalized care. In stroke units, the design of the physical environment should support evidence-based care. Studies on patients' activities in relation to the design of the physical environment of stroke units are scarce...
April 20, 2018: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/29667475/how-family-caregivers-help-older-relatives-navigate-statutory-services-at-the-end-of-life-a-descriptive-qualitative-study
#17
Lisa Ann Williams, Tess Moeke-Maxwell, Janine Wiles, Stella Black, Gabriella Trussardi, Ngaire Kerse, Merryn Gott
BACKGROUND: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. AIM: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life...
April 1, 2018: Palliative Medicine
https://www.readbyqxmd.com/read/29659834/an-open-source-integrated-pedigree-data-management-and-visualization-tool-for-genetic-epidemiology
#18
Thilina Ranaweera, Enes Makalic, John L Hopper, Adrian Bickerstaffe
With advances in genetic epidemiology, increasingly large amounts of pedigree-related information are being collected by family studies, including twin studies. To date, biomedical data management systems that cater for family data have usually done so as part of their standard (non-family-centric) data model. Consequently, data managers with computing expertise are needed to extract family datasets and perform family-centric operations. We present a robust approach to handling large family datasets. Our approach is implemented as a new module which extends the capabilities of The Ark, an open-source web-based biomedical data management tool...
April 5, 2018: International Journal of Epidemiology
https://www.readbyqxmd.com/read/29657514/navigating-limited-and-uncertain-access-to-subsidized-housing-after-prison
#19
Danya E Keene, Alana Rosenberg, Penelope Schlesinger, Monica Guo, Kim M Blankenship
An emerging literature has documented the challenges that formerly incarcerated individuals face in securing stable housing. Given the increasingly unaffordable rental market, rental subsidies represent an important and understudied source of stable housing for this population. The existing literature has described substantial discretion and a varied policy landscape that determine former prisoners' access to housing subsidies, or subsidized housing spaces that are leased to members of their social and family networks...
2018: Housing Policy Debate
https://www.readbyqxmd.com/read/29650743/improving-transition-to-adulthood-for-adolescents-with-intellectual-and-developmental-disabilities-proactive-developmental-and-systems-perspective
#20
REVIEW
Shara Ally, Kerry Boyd, Dara Abells, Khush Amaria, Yani Hamdani, Alvin Loh, Ullanda Niel, Samantha Sacks, Sarah Shea, William F Sullivan, Brian Hennen
OBJECTIVE: To demonstrate how family physicians can contribute to a piece of the journey of improving quality-of-life outcomes for people with intellectual and developmental disabilities (IDD) when they undergo the transition from adolescence to adulthood. SOURCES OF INFORMATION: The "Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines" literature review and interdisciplinary input. MAIN MESSAGE: Family physicians should be proactive in anticipating and supporting the transition of people with IDD from adolescence to adulthood...
April 2018: Canadian Family Physician Médecin de Famille Canadien
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