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If they are OK, we are OK: the experience of partners living with neuromyelitis optica

Aim: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population.

Thu, 03/28/2019 - 12:57

Helping lay carers of people with advanced cancer and their GPs to talk: an exploration of Australian users' views of a simple carer health checklist

The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting.

Mon, 03/25/2019 - 10:33

A systematic review on the factors associated with positive experiences in carers of someone with cancer

The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015.

Fri, 03/22/2019 - 15:44

Predicting psychological distress of informal carers of individuals with major depression or bipolar disorder

Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder.

Tue, 02/19/2019 - 20:50

Facilitators and barriers to adaptive implementation of the Meeting Centers Support Program (MCSP) in three European countries; the process evaluation within the MEETINGDEM study

Background: In the MEETINGDEM project, the Meeting Centers Support Program (MCSP) was adaptively implemented and evaluated in three European countries: Italy, Poland, and the United Kingdom. The aim of this study was to investigate overall and country-specific facilitators and barriers to the implementation of MCSP in these European countries.; Methods: A qualitative multiple case study design was used. Based on the theoretical model of adaptive implementation, a checklist was composed of potential facilitators and barriers to the implementation of MCSP.

Mon, 02/18/2019 - 22:08

The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

Background: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain.; Method: People with moderate to advanced PD, with an informal carer were invited to participate.

Fri, 02/01/2019 - 11:01

Evaluation of discharge documentation after hospitalization for stroke patients discharged home in Australia: A cross-sectional, pilot study

In this cross-sectional study, we evaluated the quality of discharge documentation for stroke patients discharged home. Participants were stroke patients discharged from a regional tertiary acute and rehabilitation hospital in Australia from 2014 to 2015. Compliance with expected discharge documentation and its relationship with readmission was measured using an audit instrument for stroke patients (n = 54), and a post-discharge survey of carers was conducted.

Fri, 08/17/2018 - 16:16

Perceptions of the care received from Australian palliative care services: A caregiver perspective

Background:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.Objective: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.Method: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey.

Thu, 07/05/2018 - 10:57

Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Thu, 07/20/2017 - 15:24

'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services

Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis.

Thu, 07/20/2017 - 15:16