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https://www.readbyqxmd.com/read/29457743/a-framework-for-complexity-in-palliative-care-a-qualitative-study-with-patients-family-carers-and-professionals
#1
Sophie Pask, Cathryn Pinto, Katherine Bristowe, Liesbeth van Vliet, Caroline Nicholson, Catherine J Evans, Rob George, Katharine Bailey, Joanna M Davies, Ping Guo, Barbara A Daveson, Irene J Higginson, Fliss Em Murtagh
BACKGROUND: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. AIM: To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. DESIGN: In-depth qualitative interviews, analysed using Framework analysis...
February 1, 2018: Palliative Medicine
https://www.readbyqxmd.com/read/29457585/training-nurses-in-a-competency-framework-to-support-adults-with-epilepsy-and-intellectual-disability-the-epaid-cluster-rct
#2
Howard Ring, James Howlett, Mark Pennington, Christopher Smith, Marcus Redley, Caroline Murphy, Roxanne Hook, Adam Platt, Nakita Gilbert, Elizabeth Jones, Joanna Kelly, Angela Pullen, Adrian Mander, Cam Donaldson, Simon Rowe, James Wason, Fiona Irvine
BACKGROUND: People with an intellectual (learning) disability (ID) and epilepsy have an increased seizure frequency, higher frequencies of multiple antiepileptic drug (AED) use and side effects, higher treatment costs, higher mortality rates and more behavioural problems than the rest of the population with epilepsy. The introduction of nurse-led care may lead to improvements in outcome for those with an ID and epilepsy; however, this has not been tested in a definitive clinical trial...
February 2018: Health Technology Assessment: HTA
https://www.readbyqxmd.com/read/29457295/-something-that-happens-at-home-and-stays-at-home-an-exploration-of-the-lived-experience-of-young-carers-in-western-australia
#3
Emma McDougall, Moira O'Connor, Joel Howell
There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes...
February 19, 2018: Health & Social Care in the Community
https://www.readbyqxmd.com/read/29454710/experiences-of-guilt-shame-and-blame-in-those-affected-by-burns-a-qualitative-systematic-review
#4
REVIEW
Rachel Kornhaber, Charmaine Childs, Michelle Cleary
BACKGROUND: A significant burn can severely impact the lives of survivors and their carers. This systematic review sought to incorporate the experiences of guilt, blame and shame across the lifespan for burn survivors, their families as well as the experiences of the parents of burned children. METHODS: A systematic review of qualitative studies on the experiences and perspectives of guilt, blame and shame by those affected by burn trauma across the lifespan. The databases, Pubmed, Scopus, EMBASE, CINAHL, PsychINFO were systematically searched...
February 14, 2018: Burns: Journal of the International Society for Burn Injuries
https://www.readbyqxmd.com/read/29454383/multidimensional-needs-of-patients-living-and-dying-with-heart-failure-in-kenya-a-serial-interview-study
#5
Kellen N Kimani, Scott A Murray, Liz Grant
BACKGROUND: Heart failure is an emerging challenge for Sub Saharan Africa. However, research on patients' needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya. METHODS: We purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers...
February 17, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29454331/the-increasing-importance-of-a-continence-nurse-specialist-to-improve-outcomes-and-save-costs-of-urinary-incontinence-care-an-analysis-of-future-policy-scenarios
#6
Margreet G Franken, Isaac Corro Ramos, Jeanine Los, Maiwenn J Al
BACKGROUND: In an ageing population, it is inevitable to improve the management of care for community-dwelling elderly with incontinence. A previous study showed that implementation of the Optimum Continence Service Specification (OCSS) for urinary incontinence in community-dwelling elderly with four or more chronic diseases results in a reduction of urinary incontinence, an improved quality of life, and lower healthcare and lower societal costs. The aim of this study was to explore future consequences of the OCSS strategy of various healthcare policy scenarios in an ageing population...
February 17, 2018: BMC Family Practice
https://www.readbyqxmd.com/read/29454050/when-travel-is-a-challenge-travel-medicine-and-the-dis-abled-traveller
#7
REVIEW
Irmgard Bauer
Travellers with recognised disabilities or the dis-ability to function as required during a trip have been overlooked in the travel medicine literature. This paper provides a starting point for further discussion and research into this neglected traveller population. In contrast, tourism research has explored travel with a disability for some time in order to understand the travellers' needs and to improve services accordingly. The contemporary bio-psycho-social understanding of disability serves as the framework for exploring motivations to travel as well as barriers, such as inter and intrapersonal, economic, structural and attitudinal obstacles...
February 14, 2018: Travel Medicine and Infectious Disease
https://www.readbyqxmd.com/read/29453244/white-matter-change-with-apathy-and-impulsivity-in-frontotemporal-lobar-degeneration-syndromes
#8
Claire J Lansdall, Ian T S Coyle-Gilchrist, P Simon Jones, Patricia Vázquez Rodríguez, Alicia Wilcox, Eileen Wehmann, Katrina M Dick, Trevor W Robbins, James B Rowe
OBJECTIVE: To identify the white matter correlates of apathy and impulsivity in the major syndromes associated with frontotemporal lobar degeneration, using diffusion-weighted imaging and data from the PiPPIN (Pick's Disease and Progressive Supranuclear Palsy: Prevalence and Incidence) study. We included behavioral and language variants of frontotemporal dementia, corticobasal syndrome, and progressive supranuclear palsy. METHODS: Seventy patients and 30 controls underwent diffusion tensor imaging at 3-tesla after detailed assessment of apathy and impulsivity...
February 16, 2018: Neurology
https://www.readbyqxmd.com/read/29451670/-it-s-a-traumatic-illness-traumatic-to-witness-a-qualitative-study-of-the-experiences-of-bereaved-family-caregivers-of-patients-with-cutaneous-t-cell-lymphoma
#9
D Orlowska, L E Selman, T Beynon, E Radcliffe, S Whittaker, F Child, R Harding
BACKGROUND: Cutaneous T-cell lymphomas (CTCL) are rare cancers which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. OBJECTIVES: To explore the experiences of bereaved family caregivers of patients with CTCL. METHODS: Single semi-structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra-regional CTCL clinic...
February 16, 2018: British Journal of Dermatology
https://www.readbyqxmd.com/read/29451026/the-tim-system-developing-a-novel-telehealth-service-to-improve-access-to-specialist-care-in-motor-neurone-disease-using-user-centered-design
#10
Esther V Hobson, Wendy O Baird, Rebecca Partridge, Cindy L Cooper, Susan Mawson, Ann Quinn, Pamela J Shaw, Theresa Walsh, Daniel Wolstenholme, Christopher J Mcdermott
OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. METHODS: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers...
February 16, 2018: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/29449202/a-web-based-psychoeducational-intervention-for-adolescent-depression-design-and-development-of-moodhwb
#11
Rhys Bevan Jones, Anita Thapar, Frances Rice, Harriet Beeching, Rachel Cichosz, Becky Mars, Daniel J Smith, Sally Merry, Paul Stallard, Ian Jones, Ajay K Thapar, Sharon A Simpson
BACKGROUND: Depression is common in adolescence and leads to distress and impairment in individuals, families and carers. Treatment and prevention guidelines highlight the key role of information and evidence-based psychosocial interventions not only for individuals but also for their families and carers. Engaging young people in prevention and early intervention programs is a challenge, and early treatment and prevention of adolescent depression is a major public health concern. There has been growing interest in psychoeducational interventions to provide accurate information about health issues and to enhance and develop self-management skills...
February 15, 2018: JMIR Mental Health
https://www.readbyqxmd.com/read/29448970/dementia-clinical-trial-implications-of-mild-behavioral-impairment
#12
Moyra E Mortby, Sandra E Black, Serge Gauthier, David Miller, Anton Porsteinsson, Eric E Smith, Zahinoor Ismail
The World Alzheimer Report 2016 estimated that 47 million people are living with dementia worldwide (Alzheimer's Disease International, 2016). In the inaugural World Health Organization Ministerial Conference on Global Action against Dementia, six of the top ten research priorities were focused on prevention, identification, and reduction of dementia risk, and on delivery and quality of care for people with dementia and their carers (Shah et al., 2016). While the Lancet Neurology Commission has suggested that even minor advances to delay progression or ameliorate symptoms might have substantial financial and societal benefits (Winblad et al...
February 2018: International Psychogeriatrics
https://www.readbyqxmd.com/read/29446518/interwoven-histories-mental-health-nurses-with-experience-of-mental-illness-qualitative-findings-from-a-mixed-methods-study
#13
Jennifer Oates, Nicholas Drey, Julia Jones
The effects of mental health nurses' own experience of mental illness or being a carer have rarely been researched beyond the workplace setting. This study aimed to explore how the experience of mental illness affects mental health nurses' lives outside of and inside work. A sample of 26 mental health nurses with personal experience of mental illness took part in semistructured interviews. Data were analysed thematically using a six-phase approach. The analysis revealed the broad context of nurses' experiences of mental illness according to three interwoven themes: mental illness as part of family life; experience of accessing services; and life interwoven with mental illness...
February 15, 2018: International Journal of Mental Health Nursing
https://www.readbyqxmd.com/read/29443933/mental-health-interventions-for-parent-carers-of-children-with-autistic-spectrum-disorder-practice-guidelines-from-a-critical-interpretive-synthesis-cis-systematic-review
#14
REVIEW
Denise Catalano, Linda Holloway, Elias Mpofu
Parent carers of children with Autism Spectrum Disorder (ASD) often report increased levels of stress, depression, and anxiety. Unmet parent carer mental health needs pose a significant risk to the psychological, physical, and social well-being of the parents of the child affected by ASD and jeopardize the adaptive functioning of the family as well as the potential of the child affected by ASD. This systematic review identifies key qualities of interventions supporting the mental health of parent carers and proposes practitioner-parent carer support guidelines...
February 14, 2018: International Journal of Environmental Research and Public Health
https://www.readbyqxmd.com/read/29440050/carer-experience-of-end-of-life-service-provision-a-social-network-analysis
#15
Rosemary Leonard, Debbie Horsfall, John Rosenberg, Kerrie Noonan
OBJECTIVE: To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. METHODS: Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. RESULTS: Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system...
February 10, 2018: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/29439816/-burden-empathy-and-resilience-in-dependent-people-caregivers
#16
Yolanda Navarro-Abal, María José López-López, José Antonio Climent-Rodríguez, Juan Gómez-Salgado
OBJECTIVE: To analyse the differences in perceived burden between family caregivers who are users of patient associations and those who are not; to assess the relationship between burden, resilience, and empathy levels. METHOD: Retrospective ex post facto study of two groups, one of them quasi control. The sample was composed of 155 informal caregivers (28 men and 155 women); 109 of them were users of patient relatives' associations and 46 were not. Both descriptive and bivariate comparative analyses were carried out...
February 10, 2018: Gaceta Sanitaria
https://www.readbyqxmd.com/read/29439085/idea-intervention-to-prevent-depressive-symptoms-and-promote-well-being-in-early-stage-dementia-protocol-for-a-randomised-controlled-feasibility-study
#17
Remco Tuijt, Gill Livingston, Rebecca L Gould, Rebecca Jones, Elisabet Sole Verdaguer, Vasiliki Orgeta
OBJECTIVE: Depressive symptoms are common among people with dementia, impacting quality of life and cognitive and functional decline. Currently, little is known about the acceptability and feasibility of psychological interventions for people with mild dementia, with recent reviews identifying the need for further evidence. Developing and evaluating psychological interventions to prevent and treat these symptoms is, therefore, an important clinical and research priority. This protocol describes a study testing the acceptability and feasibility of a manual-based behavioural activation (BA) intervention for preventing and treating depressive symptoms in people with mild dementia...
February 8, 2018: BMJ Open
https://www.readbyqxmd.com/read/29439072/-because-my-brain-isn-t-as-active-as-it-should-be-my-eyes-don-t-always-see-a-qualitative-exploration-of-the-stress-process-for-those-living-with-posterior-cortical-atrophy
#18
Emma Harding, Mary Pat Sullivan, Rachel Woodbridge, Keir X X Yong, Anne McIntyre, Mary L Gilhooly, Kenneth J Gilhooly, Sebastian J Crutch
OBJECTIVES: To explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families. DESIGN: A qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed. SETTING: Participants' homes. PARTICIPANTS: 20 individuals in the mild to moderate stages of PCA and 20 family carers...
February 8, 2018: BMJ Open
https://www.readbyqxmd.com/read/29436322/does-the-community-based-combined-meeting-center-support-programme-mcsp-make-the-pathway-to-day-care-activities-easier-for-people-living-with-dementia-a-comparison-before-and-after-implementation-of-mcsp-in-three-european-countries
#19
Dorota Szcześniak, Rose-Marie Dröes, Franka Meiland, Dawn Brooker, Elisabetta Farina, Rabih Chattat, Shirley B Evans, Simon C Evans, Francesca Lea Saibene, Katarzyna Urbańska, Joanna Rymaszewska
BACKGROUND: The "pathway to care" concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored...
February 13, 2018: International Psychogeriatrics
https://www.readbyqxmd.com/read/29434020/children-and-young-people-s-versus-parents-responses-in-an-english-national-inpatient-survey
#20
Dougal S Hargreaves, Steve Sizmur, Jacqueline Pitchforth, Amy Tallett, Sara L Toomey, Bridget Hopwood, Mark A Schuster, Russell M Viner
OBJECTIVE: Despite growing interest in children and young people's (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission. DESIGN: Cross-sectional analysis of national survey data. SETTING: Inpatients aged 8-15 years in eligible National Health Service hospitals, July-September 2014...
February 6, 2018: Archives of Disease in Childhood
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