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Rare health condition 27: Mayer-Rokitansky-Küster-Hauser syndrome; and the role of informal caregivers

The purpose of this series is to highlight a range of rare health conditions. Rare health conditions are those that affect no more and usually less than 1 person in every 2000 and many HCAs and nurses will encounter some of these conditions, given the high number of them. This 27th article will explore one of these conditions—Mayer-Rokitansky-KüsterHauser syndrome—and the role and support needs of the ‘informal’ family caregiver.

Mon, 02/03/2020 - 10:36

Disseminating START: training clinical psychologists and admiral nurses as trainers in a psychosocial intervention for carers of people with dementia’s depressive and anxiety symptoms

OBJECTIVES: To put into practice and to evaluate an initial dissemination programme for the Strategies for Relatives (START), a clinically and cost-effective manualised intervention for family carers of people with dementia. SETTING: We offered three-hour 'train-the-trainer' sessions through the British Psychological Society and Dementia UK. PARTICIPANTS: Clinical psychologists and admiral nurses across the UK. PRIMARY AND SECONDARY OUTCOME MEASURES: After the training session, attendees completed an evaluation.

Tue, 05/14/2019 - 15:05

Informal caregiving and markers of adiposity in the UK Household Longitudinal Study

OBJECTIVES: The aim was to investigate associations between caregiving and adiposity using a representative UK longitudinal study. We also investigated whether associations differed by age, gender and caregiving characteristics. METHODS: Data on 9,421 participants aged 16+ from three waves (2009-2012) of the UK Household Longitudinal Study were used. Body mass index, waist circumference and percentage body fat were assessed.

Tue, 05/14/2019 - 14:49

Disciplinary power and the process of training informal carers on stroke units

This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role.

Fri, 04/05/2019 - 09:33

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth.

Fri, 03/22/2019 - 14:57

Informal caregiving and metabolic markers in the UK Household Longitudinal Study

Objectives: Informal caregiving is associated with poorer mental and physical health. Little research has yet focused on objectively measured health risk factors, such as metabolic markers. The aim of this study was to investigate whether informal caregiving was associated with markers of metabolism in a large, representative UK longitudinal study.

Tue, 02/05/2019 - 11:54

Informal care: choice or constraint?

Background: 'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.; Aim: In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.; Methods: Data were derived from 1100 responses to a postal survey conducted in a British city.

Tue, 01/22/2019 - 16:29

Involving healthcare professionals and family carers in setting research priorities for end-of-life care

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted.

Mon, 09/10/2018 - 10:50

Exploration of the perceived impact of carer involvement in mental health nurse education: Values, attitudes and making a difference

Academic settings are seen to be an ideal, although potentially privileged, environments in which to demonstrate meaningful and authentic involvement. Despite the lack of evaluation and evidence relating to the impact of involvement being noted in the early 2000's, there continues to be a lack of evaluative research in this area (Happell et al., 2014) with the examination of the carers perspective being even more limited.

Thu, 07/05/2018 - 09:29

Supporting people who care for adults with dementia

New coping programme alleviates depression and does it cost effectively. 

Thu, 07/20/2017 - 15:24

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