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Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities

Aims and objectives To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design An interpretative qualitative design.

Fri, 11/22/2019 - 17:20

Informal carers' experience of assistive technology use in dementia care at home: A systematic review

Background: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them.

Wed, 10/23/2019 - 09:21

Evaluating User Engagement with a Reminiscence App Using Cross-Comparative Analysis of User Event Logs and Qualitative Data

The aim of this study was to evaluate the usage of a reminiscence app by people living with dementia and their family carers, by comparing event log data generated from app usage alongside the qualitative experience of the process. A cross-comparative analysis of electronic event logging data with qualitative interview data was conducted. Electronic event logging data were obtained for 28 participating dyads (n = 56) and the interview sample comprised 14 people living with dementia and 16 family carers (n = 30).

Mon, 10/14/2019 - 11:58

Psychosocial singing interventions for the mental health and well-being of family carers of patients with cancer: Results from a longitudinal controlled study

Objective The mental health challenges facing people who care for somebody with cancer are well documented. While many support interventions focus on provision of information or cognitive behavioural therapy, the literature suggests that psychosocial interventions could also be of value, especially given the low social support frequently reported by carers. Singing is a psychosocial activity shown to improve social support, increase positive emotions, and reduce fatigue and stress.

Mon, 10/07/2019 - 14:36

Carers at breaking point: Making the case for carers' breaks in England

This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks.

Mon, 10/07/2019 - 14:27

An exploration of the experience of using calendar reminders for people with dementia and family carers

People with dementia and family carers often use calendars to support time orientation to maintain routine. However, little is known about the use of calendars as a compensatory strategy. This study examines the experience and practicalities of using calendar reminders from the perspective of people with dementia and family carers. Six dyads were recruited and interviewed at home. Interpretative Phenomenological Analysis was used to develop a narrative interpreted from an occupational therapy perspective. The themes were reflected on during two subsequent focus groups.

Mon, 10/07/2019 - 14:11

Coping strategies and psychological distress in family carers of frail older people: A longitudinal study

Background: Carers of dependent older people experience high levels of psychological distress. However, little is known about the effects of coping on carer distress over time. In this one year longitudinal study we investigated the relationship between distress, and coping strategies in a representative sample of family carers living in Spain. Methods: Primary carers of older people were recruited (N = 200). We used probability sampling and collected data via individual interviews from 2013 to 2015.

Mon, 10/07/2019 - 13:15

Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet.

Mon, 10/07/2019 - 10:44

Development and pilot testing of the “focus on the person” form: Supporting care transitions for people with dementia

When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer–staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development.

Mon, 09/30/2019 - 14:50

Cancer, a relational disease exploring the needs of relatives to cancer patients

Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

Fri, 09/20/2019 - 14:24

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