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https://www.readbyqxmd.com/read/28550483/-it-s-just-horrible-a-qualitative-study-of-patients-and-carers-experiences-of-bowel-dysfunction-in-multiple-sclerosis
#1
Lesley Dibley, Maureen Coggrave, Doreen McClurg, Sue Woodward, Christine Norton
Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand 'what it is like' to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling...
May 26, 2017: Journal of Neurology
https://www.readbyqxmd.com/read/28545502/improving-care-for-people-with-heart-failure-in-uganda-serial-in-depth-interviews-with-patients-and-their-health-care-professionals
#2
Elizabeth Namukwaya, Liz Grant, Julia Downing, Mhoira Leng, Scott A Murray
BACKGROUND: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context...
May 25, 2017: BMC Research Notes
https://www.readbyqxmd.com/read/28544672/providing-end-of-life-care-in-disability-community-living-services-an-organizational-capacity-building-model-using-a-public-health-approach
#3
Andrea Grindrod, Bruce Rumbold
BACKGROUND: There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. METHODS: A mixed-methods approach was used...
May 24, 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28541798/intergenerational-care-an-exploration-of-consumefr-preferences-and-willingness-to-pay-for-care
#4
N Vecchio, K Radford, J A Fitzgerald, T Comans, P Harris, N Harris
OBJECTIVES: To identify feasible models of intergenerational care programmes, that is, care of children and older people in a shared setting, to determine consumer preferences and willingness to pay. METHOD: Feasible models were constructed in extensive consultations with a panel of experts using a Delphi technique (n = 23) and were considered based on their practical implementation within an Australian setting. This informed a survey tool that captured the preferences and willingness to pay for these models by potential consumers, when compared to the status quo...
May 25, 2017: Aging & Mental Health
https://www.readbyqxmd.com/read/28537201/capturing-sexual-assault-data
#5
S Aqif Mukhtar, Debbie A Smith, Maureen A Phillips, Maire C Kelly, Renate R Zilkens, James B Semmens
BACKGROUND: The Sexual Assault Resource Center (SARC) in Perth, Western Australia provides free 24-hour medical, forensic, and counseling services to persons aged over 13 years following sexual assault. OBJECTIVE: The aim of this research was to design a data management system that maintains accurate quality information on all sexual assault cases referred to SARC, facilitating audit and peer-reviewed research. METHODS: The work to develop SARC Medical Services Clinical Information System (SARC-MSCIS) took place during 2007-2009 as a collaboration between SARC and Curtin University, Perth, Western Australia...
January 1, 2017: HIM Journal
https://www.readbyqxmd.com/read/28537124/family-group-interventions-in-an-early-psychosis-program-a-re-evaluation-of-practice-after-10%C3%A2-years-of-service-delivery
#6
Kate Day, Rachael Starbuck, Melissa Petrakis
INTRODUCTION: The role of family in supporting service users in coping with illness and engaging in relapse prevention in early psychosis is important. Taking on this caring though is stressful and challenging, and it has been found that support and information for carers assists in their coping and reduces isolation. AIMS: To evaluate the current utility of a psychoeducation group program in a public adult mental health service, for the families of people experiencing early psychosis...
May 1, 2017: International Journal of Social Psychiatry
https://www.readbyqxmd.com/read/28536655/supporting-looked-after-children-and-care-leavers-in-decreasing-drugs-and-alcohol-solid-protocol-for-a-pilot-feasibility-randomised-controlled-trial-of-interventions-to-decrease-risky-substance-use-drugs-and-alcohol-and-improve-mental-health-of-looked-after
#7
Hayley Alderson, Ruth McGovern, Rebecca Brown, Denise Howel, Frauke Becker, Louise Carr, Alex Copello, Tony Fouweather, Eileen Kaner, Paul McArdle, Elaine McColl, Janet Shucksmith, Alison Steele, Luke Vale, Raghu Lingam
BACKGROUND: Looked after children (LAC) and care leavers are young people who have been placed under the legal care of local authorities, in many instances due to a history of abuse and/or neglect. These young people have a significantly increased risk of substance use and mental disorder compared to their peers. The aim of the SOLID study is to assess the feasibility and acceptability of a definitive three-arm multi-centre randomised controlled trial (RCT) that compares the effectiveness of two interventions that aim to reduce risky drug and alcohol use and improve mental health among LAC aged 12 to 20 years with usual care...
2017: Pilot and Feasibility Studies
https://www.readbyqxmd.com/read/28532475/-we-re-certainly-not-in-our-comfort-zone-a-qualitative-study-of-gps-dementia-care-educational-needs
#8
Tony Foley, Siobhán Boyle, Aisling Jennings, W Henry Smithson
BACKGROUND: Rising dementia prevalence rates rise combined with the policy objective of enabling people with dementia to remain living at home, means that there will be a growing demand for dementia care in the community setting. However, GPs are challenged by dementia care and have identified it as an area in which further training is needed. Previous studies of GPs dementia care educational needs have explored the views of GPs alone, without taking the perspectives of people with dementia and family carers into account...
May 22, 2017: BMC Family Practice
https://www.readbyqxmd.com/read/28526055/developing-a-proxy-version-of-the-adult-social-care-outcome-toolkit-ascot
#9
Stacey Rand, James Caiels, Grace Collins, Julien Forder
BACKGROUND: Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments. A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded...
May 19, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/28525725/a-comparison-of-the-validity-and-responsiveness-of-the-eq-5d-5l-and-sf-6d-for-measuring-health-spillovers-a-study-of-the-family-impact-of-meningitis
#10
Arjun Bhadhuri, Sue Jowett, Kate Jolly, Hareth Al-Janabi
BACKGROUND: The "health spillover" of patient illness on family members is important to capture in economic evaluation. This study compares the construct validity and responsiveness of 2 widely used health-related quality-of-life instruments, the EQ-5D-5L and SF-6D, in capturing health spillover effects for family members with and without an informal care role (carers and noncarers). METHODS: Construct validity and responsiveness were assessed using data from a 2012 UK survey of the family impact of meningitis-related sequelae...
May 1, 2017: Medical Decision Making: An International Journal of the Society for Medical Decision Making
https://www.readbyqxmd.com/read/28517041/modifying-illness-beliefs-in-recent-onset-psychosis-carers-evaluating-the-impact-of-a-cognitively-focused-brief-group-intervention-in-a-routine-service
#11
Juliana Onwumere, Naomi Glover, Sarah Whittaker, Shireen Rahim, Lai Chu Man, Gareth James, Sanna Khan, Roya Afsharzadegan, Saal Seneviratne, Raythe Harvey, Anna Georgiades, David Raune
AIMS: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers...
May 18, 2017: Early Intervention in Psychiatry
https://www.readbyqxmd.com/read/28516470/survived-so-what-identifying-priorities-for-research-with-children-and-families-post-paediatric-intensive-care-unit
#12
Joseph C Manning, Pippa Hemingway, Sarah A Redsell
The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders...
May 17, 2017: Nursing in Critical Care
https://www.readbyqxmd.com/read/28514993/beyond-diagnosis-and-survivorship-findings-from-a-mixed-methods-study-of-a-community-based-cancer-support-service
#13
Ilse Blignault, Louise McDonnell, Diana Aspinall, Robyn Yates, Jennifer Reath
This consumer-led research investigated the client experiences and the individual and community benefits of a community-based cancer support service operating in a regional setting. The study included cross-sectional surveys, focus group discussions and key-informant interviews. In total, 114 clients, 28 carers and 20 therapists were surveyed; three client focus groups were conducted and five directors and staff were interviewed. For many clients and carers, the warm welcome experienced at first contact sets the tone for a long-term association with the organisation...
May 18, 2017: Australian Journal of Primary Health
https://www.readbyqxmd.com/read/28513190/prevalence-and-correlates-of-bullying-victimisation-and-perpetration-in-a-nationally-representative-sample-of-australian-youth
#14
Hannah J Thomas, Jason P Connor, David M Lawrence, Jennifer M Hafekost, Stephen R Zubrick, James G Scott
OBJECTIVE: Bullying prevalence studies are limited by varied measurement methods and a lack of representative samples. This study estimated the national prevalence of bullying victimisation, perpetration and combined victim-perpetration experiences in a representative population-based sample of Australian youth. The relationships between the three types of bullying involvement with a range of mental health symptoms and diagnoses were also examined. METHODS: A randomly selected nationally representative sample aged 11-17 years ( N = 2967, Mage = 14...
May 1, 2017: Australian and New Zealand Journal of Psychiatry
https://www.readbyqxmd.com/read/28501755/new-challenges-for-verbal-autopsy-considering-the-ethical-and-social-implications-of-verbal-autopsy-methods-in-routine-health-information-systems
#15
REVIEW
Hebe N Gouda, Abraham D Flaxman, Claire E Brolan, Rohina Joshi, Ian D Riley, Carla AbouZahr, Sonja Firth, Rasika Rampatige, Alan D Lopez
Verbal autopsy (VA) methods are designed to collect cause-of-death information from populations where many deaths occur outside of health facilities and where death certification is weak or absent. A VA consists of an interview with a relative or carer of a recently deceased individual in order to gather information on the signs and symptoms the decedent presented with prior to death. These details are then used to determine and assign a likely cause-of-death. At a population level this information can be invaluable to help guide prioritisation and direct health policy and services...
May 3, 2017: Social Science & Medicine
https://www.readbyqxmd.com/read/28499149/home-as-a-place-of-caring-and-wellbeing-a-qualitative-study-of-informal-carers-and-caring-networks-lived-experiences-of-providing-in-home-end-of-life-care
#16
Debbie Horsfall, Rosemary Leonard, John P Rosenberg, Kerrie Noonan
Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph...
May 9, 2017: Health & Place
https://www.readbyqxmd.com/read/28499065/not-sick-enough-experiences-of-carers-of-people-with-mental-illness-negotiating-care-for-their-relatives-with-mental-health-services
#17
Michael Olasoji, Phil Maude, Kay McCauley
AIM: The literature reporting experiences of relatives of people with mental illness regarding their interactions with mental health services identifies many commonalities. However, the actual experience of carers engaging the services and understanding health care systems remains a gap in the literature. The aim of this study was to explore the experiences of carers (of people with a severe mental illness) in a major area mental health service in Victoria Australia as they fulfil their caring role whilst negotiating support for their relative...
May 12, 2017: Journal of Psychiatric and Mental Health Nursing
https://www.readbyqxmd.com/read/28498024/a-prospective-risk-assessment-of-informal-carers-medication-administration-errors-within-the-domiciliary-setting
#18
Anam Parand, Giuliana Faiella, Bryony Dean Franklin, Maximilian Johnston, Fabrizio Clemente, Neville A Stanton, Nick Sevdalis
Increasingly, medication is being administered at home by family and friends of the care-recipient. This study aims to identify and analyse risks associated with potential drug administration errors made by informal carers at home. We mapped medication administration at home with a multidisciplinary team that included carers, healthcare professionals and patients. Evidence-based risk-analysis methodologies were applied: Healthcare Failure Modes and Effect Analysis (HFMEA), Systematic Human Error Reduction and Prediction Analysis (SHERPA) and Systems-Theoretic Accident Model and Processes (STAMP)...
May 12, 2017: Ergonomics
https://www.readbyqxmd.com/read/28490554/feasibility-cluster-randomised-controlled-trial-of-a-within-consultation-intervention-to-reduce-antibiotic-prescribing-for-children-presenting-to-primary-care-with-acute-respiratory-tract-infection-and-cough
#19
Peter S Blair, Sophie Turnbull, Jenny Ingram, Niamh Redmond, Patricia Jane Lucas, Christie Cabral, Sandra Hollinghurst, Padraig Dixon, Tim Peters, Jeremy Horwood, Paul Little, Nick A Francis, Anna Gilbertson, Catherine Jameson, Alastair D Hay
OBJECTIVE: To investigate recruitment and retention, data collection methods and the acceptability of a 'within-consultation' complex intervention designed to reduce antibiotic prescribing. DESIGN: Primary care feasibility cluster randomised controlled trial. SETTING: 32 general practices in South West England recruiting children from October 2014 to April 2015. PARTICIPANTS: Children (aged 3 months to <12 years) with acute cough and respiratory tract infection (RTI)...
May 9, 2017: BMJ Open
https://www.readbyqxmd.com/read/28488476/dementia-guide-for-carers-and-care-providers
#20
(no author information available yet)
This app is for carers of people with dementia. Developed by Health Education England's Thames Valley team in partnership with the University of Reading and in collaboration with healthcare professionals and carers, it offers practical information to support users' understanding of the progressive nature of dementia and the challenges of caring for someone with the condition.
May 10, 2017: Nursing Standard
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