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informal carer

Deborah Edwards, Sally Anstey, Daniel Kelly, Jessica Ballie, Jane Hopkinson
AIMS AND OBJECTIVES: To explore the views of student nurses' and stakeholders of what is important for student nurses to know about cancer treatment and care. BACKGROUND: Worldwide, the number of people living with cancer is increasing because the population is aging and effective cancer treatments are prolonging survival. All nurses need knowledge, skills, confidence and competence to support people living with cancer. Education is an important tool in preparing a nursing workforce that can support people affected by cancer...
October 18, 2016: Journal of Clinical Nursing
Gisselle Gallego, Angela Dew, Michelle Lincoln, Anita Bundy, Rebecca Jean Chedid, Kim Bulkeley, Jennie Brentnall, Craig Veitch
In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban-dwelling counterparts. This cross-sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services...
October 17, 2016: Health & Social Care in the Community
E Teasdale, I Muller, M Santer
BACKGROUND: Childhood eczema is very common and can have substantial impact on quality of life. One of the main treatments is topical-corticosteroids, but these are often under-used by parents/carers for reasons that include concerns about safety. OBJECTIVES: To explore understandings and concerns about topical-corticosteroids amongst parents/carers of children with eczema who had posted messages in online forums. METHODS: A qualitative study of messages and their resultant discussions about topical-corticosteroids for childhood eczema posted by parents/carers on two UK-based discussion forums...
October 18, 2016: British Journal of Dermatology
Hiral Shah, Emiliano Albanese, Cynthia Duggan, Igor Rudan, Kenneth M Langa, Maria C Carrillo, Kit Yee Chan, Yves Joanette, Martin Prince, Martin Rossor, Shekhar Saxena, Heather M Snyder, Reisa Sperling, Mathew Varghese, Huali Wang, Marc Wortmann, Tarun Dua
At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria...
November 2016: Lancet Neurology
Savita Katbamna, Lisa Manning, Amit Mistri, Mark Johnson, Thompson Robinson
OBJECTIVES: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress. DESIGN: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers...
October 15, 2016: Ethnicity & Health
Stecy Yghemonos
No abstract text is available yet for this article.
November 2016: Primary Health Care Research & Development
Silvana E Mengoni, Bob Gates, Georgina Parkes, David Wellsted, Garry Barton, Howard Ring, Mary Ellen Khoo, Deela Monji-Patel, Karin Friedli, Asif Zia, Marie-Anne Durand
PURPOSE: Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID. MATERIALS AND METHODS: People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only...
October 10, 2016: Epilepsy & Behavior: E&B
Gail Ewing, Clarissa Penfold, John Benson, Ravi Mahadeva, Sophie Howson, Julie Burkin, Sara Booth, Roberta Lovick, David Gilligan, Christopher Todd, Morag Farquhar
CONTEXT: Carers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease which focus on symptoms are scarce and absent for breathlessness. OBJECTIVES: To establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness and relevant outcomes for a future randomised controlled trial (RCT) of an educational intervention for carers...
October 7, 2016: Journal of Pain and Symptom Management
Dilini Jayalath, Kunle Ashaye, Lia Kvavilashvili
INTRODUCTION: Carers' diaries have been used in very few instances in dementia to assist with gathering information about persons with dementia in the community. The main aim of this study was to compare problems identified using diaries kept by family carers for a week with carers' oral recollection of problems. METHOD: Carers were randomly allocated into two groups, diary and control groups. In the diary group, carers received a diary and instructions on how to complete it for 7 days...
2016: Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring
Jorge Jordan, Pau Miro-Martinez, Borja Vargas, Manuel Varela-Entrecanales, David Cuesta-Frau
Body temperature monitoring provides health carers with key clinical information about the physiological status of patients. Temperature readings are taken periodically to detect febrile episodes and consequently implement the appropriate medical countermeasures. However, fever is often difficult to assess at early stages, or remains undetected until the next reading, probably a few hours later. The objective of this article is to develop a statistical model to forecast fever before a temperature threshold is exceeded to improve the therapeutic approach to the subjects involved...
September 27, 2016: Journal of Critical Care
Susan Bergin, Carole Mockford
Informal carers are increasingly providing specialist care at home for people living with motor neurone disease. The carers may experience significant deterioration in their quality of life as a result of the physical and psychological burden they undertake. This systematic review seeks to provide evidence-based recommendations to enable healthcare professionals to support carers appropriately to maintain their wellbeing and to continue providing care at home. Inclusion criteria included articles focusing on the experience of informal carers of people with motor neurone disease, particularly when reporting on their perspective of professional services...
October 2, 2016: British Journal of Community Nursing
Francesco Barbabella, Arianna Poli, Frida Andréasson, Benjamin Salzmann, Roberta Papa, Elizabeth Hanson, Areti Efthymiou, Hanneli Döhner, Cristina Lancioni, Patrizia Civerchia, Giovanni Lamura
BACKGROUND: Informal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is increasing interest and growing research in Europe on Web-based support addressing family caregivers and their needs. However, the level of development and penetration of innovative Web-based services for caregivers is still quite low and the access to traditional face-to-face services can be problematic for logistic, availability, and quality reasons...
October 6, 2016: JMIR Research Protocols
Sarah G Dean, Leon Poltawski, Anne Forster, Rod S Taylor, Anne Spencer, Martin James, Rhoda Allison, Shirley Stevens, Meriel Norris, Anthony I Shepherd, Raff Calitri
INTRODUCTION: The Rehabilitation Training (ReTrain) intervention aims to improve functional mobility, adherence to poststroke exercise guidelines and quality of life for people after stroke. A definitive randomised controlled trial (RCT) is required to assess the clinical and cost-effectiveness of ReTrain, which is based on Action for Rehabilitation from Neurological Injury (ARNI). The purpose of this pilot study is to assess the feasibility of such a definitive trial and inform its design...
October 3, 2016: BMJ Open
Basil Alzougool, Shanton Chang, Kathleen Gray
There has been little research that provides a comprehensive account of the nature and aspects of information needs of informal carers. The authors have previously developed and validated a framework that accounts for major underlying states of information need. This paper aims to apply this framework to explore whether there are common demographic and socioeconomic characteristics that affect the information needs states of carers. A questionnaire about the information needs states was completed by 198 carers above 18 years old...
September 30, 2016: Informatics for Health & Social Care
Patrizia d'Ettorre, Claudio Carere, Lara Demora, Pauline Le Quinquis, Lisa Signorotti, Dalila Bovet
Emotional state may influence cognitive processes such as attention and decision-making. A cognitive judgement bias is the propensity to anticipate either positive or negative consequences in response to ambiguous information. Recent work, mainly on vertebrates, showed that the response to ambiguous stimuli might change depending on an individual's affective state, which is influenced by e.g. the social and physical environment. However, the response to ambiguous stimuli could also be affected by the individual's behavioural type (personality), a question that has been under-investigated...
September 27, 2016: Behavioural Processes
Christine Toye, Richard Parsons, Susan Slatyer, Samar M Aoun, Rachael Moorin, Rebecca Osseiran-Moisson, Keith D Hill
BACKGROUND: Hospital discharge of older people receiving care at home offers a salient opportunity to identify and address their family caregivers' self-identified support needs. OBJECTIVES: This study tested the hypothesis that the extent to which family caregivers of older people discharged home from hospital felt prepared to provide care at home would be positively influenced by their inclusion in the new Further Enabling Care at Home program. DESIGN: This single-blind randomised controlled trial compared outcomes from usual care alone with those from usual care plus the new program...
September 20, 2016: International Journal of Nursing Studies
Siobhan Fox, Alison Cashell, W George Kernohan, Marie Lynch, Ciara McGlade, Tony O'Brien, Sean S O'Sullivan, Mary J Foley, Suzanne Timmons
BACKGROUND: Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. AIM: (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care...
September 28, 2016: Palliative Medicine
Elena Huerta-Ramos, Maria Soledad Escobar-Villegas, Katya Rubinstein, Zsolt Szabolcs Unoka, Eva Grasa, Margarita Hospedales, Erika Jääskeläinen, Elena Rubio-Abadal, Asaf Caspi, István Bitter, Jesus Berdun, Jussi Seppälä, Susana Ochoa, Kata Fazekas, Iluminada Corripio, Judith Usall
BACKGROUND: Despite the theoretical potential of mHealth solutions in the treatment of patients with schizophrenia, there remains a lack of technological tools in clinical practice. OBJECTIVE: The aim of this study was to measure the receptivity of patients, informal carers, and clinicians to a European integral intervention model focused on patients with persistent positive symptoms: Mobile Therapeutic Attention for Patients with Treatment-Resistant Schizophrenia (m-RESIST)...
2016: JMIR MHealth and UHealth
Dianne Goeman, J Michael, J King, Huy Luu, Claire Emmanuel, S Koch
OBJECTIVE: The aim of the Vietnamese Dementia talking-book was to address low health literacy in older people of Vietnamese background living with dementia through the provision of an online resource to help individuals, their families and carers better understand and manage this condition and provide information about available dementia services. DESIGN: This qualitative study used codesign and participatory action research to develop and refine the talking-book in consultation with expert stakeholders, a consumer advocacy group and the Vietnamese community to assess its utility and ensure cultural and linguistic appropriateness and relevance...
2016: BMJ Open
Claire Dickinson, Johanne Dow, Grant Gibson, Louise Hayes, Shannon Robalino, Louise Robinson
BACKGROUND: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. METHODS: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. RESULTS: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter...
September 26, 2016: International Psychogeriatrics
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