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Andreas Braun, Daksha P Trivedi, Angela Dickinson, Laura Hamilton, Claire Goodman, Heather Gage, Kunle Ashaye, Steve Iliffe, Jill Manthorpe
Background People living with dementia often develop distressing behavioural and psychological symptoms (BPSD) that can affect their quality of life and the capacity of family carers and staff providing support at home. This systematic review of qualitative studies considers the views and experiences of people living with dementia and care providers about these symptoms and what helps to reduce their impact. Methods The two-stage review involved (a) An initial mapping of the literature to understand the range of BPSD, and how it is operationalised by different groups, to develop a search strategy; (b) A search of electronic databases from January 2000 to March 2015, updated in October 2016...
January 1, 2018: Dementia
Daksha P Trivedi, Andreas Braun, Angela Dickinson, Heather Gage, Laura Hamilton, Claire Goodman, Kunle Ashaye, Steve Iliffe, Jill Manthorpe
Background Two-thirds of people living with dementia live at home in the UK and many experience distressing behavioural and psychological symptoms. This systematic review evaluates the effectiveness of non-pharmacological interventions for behavioural and psychological symptoms among community-dwelling people living with dementia. Methods This two-stage review undertook an initial mapping of the literature followed by a systematic review of relevant randomised controlled trials. We searched electronic databases for pertinent studies reporting outcomes from interventions from January 2000 to March 2015 and updated searches in October 2016...
January 1, 2018: Dementia
Amanda Marie Blackmore, Natasha Bear, Eve Blair, Katherine Langdon, Lisa Moshovis, Kellie Steer, Andrew C Wilson
OBJECTIVE: To determine the early predictors of respiratory hospital admissions in young people with cerebral palsy (CP). DESIGN: A 3-year prospective cohort study using linked data. PATIENTS: Children and young people with CP, aged 1 to 26 years. MAIN OUTCOME MEASURES: Self-reported and carer-reported respiratory symptoms were linked to respiratory hospital admissions (as defined by the International Statistical Classification of Diseases and Related Health Problems 10th Revision codes) during the following 3 years...
March 19, 2018: Archives of Disease in Childhood
Hannah Crawford, Heather Wilkinson
Life grids have been used in qualitative studies for the last two decades. They provide an activity which researcher and participant can focus their attention on, help build rapport, and reduce the control the researcher may hold within a session. Here we describe the novel use of life grids at the end of a data collection phase. Used in this previously unreported way, life grids assisted the closure of the data collection phase by summarizing the data collection and marking departure from the field. Creation of a life grid produced a tangible outcome, evidencing the work undertaken within the data collection period...
March 1, 2018: Qualitative Health Research
Daniel Gutiérrez Sánchez, Antonio I Cuesta-Vargas
PURPOSE: Many measurements have been developed to assess the quality of death (QoD). Among these, the Quality of Dying and Death Questionnaire (QODD) is the most widely studied and best validated. Informal carers and health professionals who care for the patient during their last days of life can complete this assessment tool. The aim of the study is to carry out a cross-cultural adaptation and a psychometric analysis of the QODD for the Spanish population. METHODS: The translation was performed using a double forward and backward method...
April 2018: European Journal of Oncology Nursing: the Official Journal of European Oncology Nursing Society
Angela Crettenden, Joey Lam, Linley Denson
BACKGROUND AND AIMS: Mothers who are primary carers of children with disabilities experience more mental health problems than mothers of typically developing children. We aimed to update and extend research into mothers' perceptions of grandparent support with care, and impacts for maternal psychological well-being, because although contemporary grandparents live longer they also work longer. METHODS: Surveys were completed by 72 mothers of clients (aged ≤8 years) of an Australian non-government disability agency...
March 15, 2018: Research in Developmental Disabilities
R V Herron, M A Wrathall
Living alongside and working with people with dementia who yell or strike out can be very demanding and sometimes harmful. It is generally understood that such actions may be a response to the social and physical environment, yet very little attention has been paid to understanding what role the environment plays in eliciting and responding to these actions across different settings. Drawing on 27 semi-structured interviews with formal and informal carers, this article examines how carers understand the actions of people with dementia in relation to their environment...
March 10, 2018: Social Science & Medicine
Raymond Smith, Vari Drennan, Ann Mackenzie, Nan Greenwood
BACKGROUND: Volunteer led befriending and peer support is provided to a wide range of people with varying needs. Despite large numbers of such schemes for carers of people with dementia, there is little evidence for any benefits they may offer. The aim of this research was to investigate the impact of befriending and peer support on carers of people with dementia and to explore their experiences of receiving the interventions using a mixed methods approach. METHODS: Nineteen carers of people with dementia were recruited from befriending and peer support services...
March 7, 2018: Archives of Gerontology and Geriatrics
Daniel Stow, Fiona E Matthews, Stephen Barclay, Steve Iliffe, Andrew Clegg, Sarah De Biase, Louise Robinson, Barbara Hanratty
Background: recognising that a patient is nearing the end of life is essential, to enable professional carers to discuss prognosis and preferences for end of life care. Objective: investigate whether an electronic frailty index (eFI) generated from routinely collected data, can be used to predict mortality at an individual level. Design: historical prospective case control study. Setting: UK primary care electronic health records...
March 13, 2018: Age and Ageing
Agnes Leu, Corinna Jung, Marianne Frech, Joe Sempik, Urs Moser, Martin Verner, Saul Becker
BACKGROUND: In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation...
March 15, 2018: BMC Health Services Research
Annette Haywood, Sarah Barnes, Hazel Marsh, Stuart G Parker
BACKGROUND: Older people with an acute illness, many of whom are also frail, form a significant proportion of the acute hospital inpatient population. Attention is focusing on ways of improving the physical environment to optimize health outcomes and staff efficiency. PURPOSE: This article explores the effects of the physical environment in three acute care settings: acute hospital site, in-patient rehabilitation hospital, and intermediate care provision (a nursing home with some beds dedicated to intermediate care) chosen to represent different steps on the acute care pathway for older people and gain the perspectives of patients, family carers, and staff...
January 1, 2018: HERD
Alessandro Bosco, Justine Schneider, Donna Maria Coleston-Shields, Lidia Sousa, Martin Orrell
OBJECTIVES: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring. METHOD: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders...
March 15, 2018: Aging & Mental Health
Johanne Dow, Jonah Robinson, Shannon Robalino, Tracy Finch, Elaine McColl, Louise Robinson
BACKGROUND: In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves...
2018: PloS One
Hannah Kuper, Tracey Smythe, Antony Duttine
Universal health coverage (UHC) has been adopted by many countries as a national target for 2030. People with disabilities need to be included within efforts towards UHC, as they are a large group making up 15% of the world's population and are more vulnerable to poor health. UHC focuses both on covering the whole population as well as providing all the services needed and must include an emphasis on health promotion, as well as disease treatment and cure. Health promotion often focusses on tackling individual behaviours, such as encouraging exercise or good nutrition...
March 14, 2018: International Journal of Environmental Research and Public Health
Mylène Bolmont, Marie-Laure Amram, Florence Rochon, Pierre-Yves Dietrich, Francesco Bianchi-Demicheli
Cancer affects sexual function, sexual health and relationships as well as mental health and quality of life. Due to the importance of sexual health for each individual and in order to ensure optimal and quality care, we have assessed the demand for sexual health and advise not only among cancer patients but also among professionals in this area and nursing staff. The results showed that sexuality was important both for patients and caregivers. Also we did find out that carers want to create a better professional network with the aim of redirecting patients to specialists according to their specific needs...
March 14, 2018: Revue Médicale Suisse
Amy O'Brien, Julie McCormack, Kimberley J Hoiles, Hunna J Watson, Rebecca A Anderson, Phillipa Hay, Sarah J Egan
OBJECTIVE: There are few evidence-based guidelines for inpatient pediatric eating disorders. The aim was to gain perspectives from those providing and receiving inpatient pediatric eating disorder care on the essential components treatment. METHOD: A modified Delphi technique was used to develop consensus-based opinions. Participants (N = 74) were recruited for three panels: clinicians (n = 24), carers (n = 31), and patients (n = 19), who endorsed three rounds of statements online...
March 14, 2018: International Journal of Eating Disorders
Olga Montvida, Jonathan Shaw, Lawrence Blonde, Sanjoy K Paul
AIMS: To inform patients and their carers about the probability of reducing HbA1c to clinically desirable levels and sustainability of such control over 2 years with major second-line anti-diabetic therapies under individual risk scenario, with and without third-line intensification. MATERIALS AND METHODS: From US Centricity Electronic Medical Records, 163,081 patients with type 2 diabetes aged 18-80 years, who initiated metformin; intensified with DPP-4 inhibitor (DPP-4i), GLP-1 receptor agonist (GLP-1RA), sulfonylurea, insulin, or thiazolidinedione; and continued second-line ≥ 6 month, were selected...
March 14, 2018: Diabetes, Obesity & Metabolism
L Bell, C Oliver, A Wittkowski, J Moss, D Hare
BACKGROUND: Catatonia-like presentations in people with autism have been increasingly recognised within research and diagnostic guidelines. The recently developed Attenuated Behaviour Questionnaire has identified that attenuated behaviour [autistic catatonia] is very prevalent in people with autism spectrum disorders (ASDs) and associated with repetitive behaviour. In the current study, we investigated attenuated behaviour within two genetic syndromes associated with ASD and examined ASD and repetitive behaviour as longitudinal predictors of attenuated behaviour...
March 13, 2018: Journal of Intellectual Disability Research: JIDR
Aileen L Bergström, Elizabeth Hanson
BACKGROUND: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research. OBJECTIVE: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes. METHODS: This integrative review includes 123 studies published since 2005...
February 5, 2018: Technology and Disability
Carol Keen, Julie Skilbeck, Helen Ross, Lauren Smith, Karen Collins, Joanne Dixey, Stephen Walters, Diana M Greenfield, John A Snowden, Susan Mawson
INTRODUCTION: While myeloma is an incurable malignancy, developments in disease management have led to increased life expectancy in recent years. Treatment typically involves stem-cell transplantation. Increased survival rates equate to more patients living with the burden of both the disease and its treatment for increasing number of years, rendering myeloma a long-term condition.Evidence exists to demonstrate the benefits of exercise for patients recovering from stem-cell transplantation, and prehabilitation-exercise before treatment-has been shown to be effective in other disease areas...
March 9, 2018: BMJ Open
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