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1 – 10 of over 6000This article reviews current policies and their impact on carers' lives, and highlights the potential limitations of a more personalised approach to care. Using some key research…
Abstract
This article reviews current policies and their impact on carers' lives, and highlights the potential limitations of a more personalised approach to care. Using some key research findings and illustrative case studies, the article argues that we should build on the achievements of the personalisation reforms, but not limit our ambition to offering individuals more choice and control over their services. Instead, there should be a focus on individuals achieving ordinary life chances and families achieving emotional and financial sustainability. For people to experience a truly integrated response to their needs, professionals must be able to achieve integration not only across service boundaries, but also across their responses to inter‐linked individuals. Recognising this lessens the risk of offering care solutions that result in trade‐offs between one family member's independence and another's.
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Anas Shehadeh, Sharyn Hunter and Sarah Jeong
This study aims to describe the current conceptualisation of self-management of dementia by family carers in the literature and from the views of dementia professionals and family…
Abstract
Purpose
This study aims to describe the current conceptualisation of self-management of dementia by family carers in the literature and from the views of dementia professionals and family carers, and to establish a more comprehensive concept of self-management of dementia by family carers.
Design/methodology/approach
A hybrid concept analysis included three phases: the theoretical phase reviewed the literature on self-management of dementia by family carers; the fieldwork phase interviewed professionals and family carers; and the analytical phase synthesised and discussed the findings from the previous two phases.
Findings
The findings revealed that self-management of dementia by family carers encompasses four domains: supporting care recipients, self-care, sustaining a positive relationship with care recipients, and personal characteristics and skills.
Originality/value
The findings highlighted the essential elements of the construct of self-management of dementia by family carers. The findings can be used as a conceptual framework of self-management and are useful in designing and evaluating self-management support interventions for family carers.
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Brianne Redquest and Yona Lunsky
There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes…
Abstract
Purpose
There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes care for people with IDD, the role and experiences of family carers, such as parents and siblings, are often neglected in this research. However, it is clear that family carers do not feel that they have sufficient knowledge about diabetes. The purpose of this commentary is to extend the content from “Diabetes and people with learning disabilities: Issues for policy, practice, and education (Maine et al., 2020)” and discuss how family carers can feel better supported when caring for someone with IDD and diabetes.
Design/methodology/approach
This commentary discusses specific efforts such as STOP diabetes, DESMOND-ID and OK-diabetes for people with IDD including family carers. Encouragement is given for health care providers to recommend such programmes to people with IDD and their family carers. It is also suggested that health care providers involve family carers in diabetes care planning and implementation for people with IDD.
Findings
It is hoped that if changes are made to current diabetes practices and more research with family carers is conducted, diabetes prevention and management for people with IDD will be more successful and family carers can feel more confident in providing support to their loved ones.
Originality/value
Research exploring the role of family carers in diabetes care for people with IDD and diabetes is very limited. This commentary makes recommendations to help family carers feel better supported in their role. It also provides areas for future research.
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Valuing People calls for a new relationship between families and staff in learning disability services. It proposes that the voices of family carers be heard, and that they should…
Abstract
Valuing People calls for a new relationship between families and staff in learning disability services. It proposes that the voices of family carers be heard, and that they should be treated as partners in policy development and implementation, including their involvement in staff training and development. The Foundation for People with Learning Disabilities has developed a tool to help staff and families to work better together. The result is a training resource called Learning with Families ‐ a training resource with a difference: the contents were developed by family carers, who are also being encouraged to deliver the training, alongside professionals, to staff who work in learning disability services, in order to improve their understanding of the experiences of families.
The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user…
Abstract
Purpose
The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.
Design/methodology/approach
The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.
Findings
Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.
Research limitations/implications
Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.
Practical implications
Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.
Social implications
The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.
Originality/value
This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.
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Viv Cooper and Cally Ward
It is ten years since Valuing People promised a ‘new deal’ for family carers and included specific objectives for involving families in local partnership boards, providing better…
Abstract
It is ten years since Valuing People promised a ‘new deal’ for family carers and included specific objectives for involving families in local partnership boards, providing better support for them in their caring role and investing in family leadership nationally, regionally and locally. Over the last decade there have been many advances towards meeting these objectives. However, we cannot afford to be complacent, and must continue investing in families and people with learning disabilities to ensure that the gains of the past decade are not lost.
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Abd Alhadi Hasan and Amal Alsulami
The study aims to identify the predictors of depression and anxiety among carers of hospitalized patients with mental illness in Eradah Complex for Mental Health Hospital.
Abstract
Purpose
The study aims to identify the predictors of depression and anxiety among carers of hospitalized patients with mental illness in Eradah Complex for Mental Health Hospital.
Design/methodology/approach
A descriptive correlational study design was conducted using a convenient sample of family carers of patients with mental illness (N = 216). The study used the Beck Depression Inventory and Anxiety Inventory scales.
Findings
The results of regression models revealed that the socio-demographic characteristics of the family carers showed that age is a statistically significant predictor of family carers depression and anxiety scores. In addition, the age of the family carers explained 36% of the variance in the family carers depression and anxiety scores, while marital status explained 64% of the total variance in the family carers’ depression and anxiety scores. Furthermore, having received support in caring significantly predicted depression and anxiety scores, and this was the case for occupation status and being diagnosed with any form of chronic illness.
Practical implications
Based on the findings of this study, the authors opine that evaluations of carers’ cognitive strategies and social support are needed to determine the risk of depression in carers of mental patients.
Originality/value
This study is the one of the limited studies conducted in Saudi Arabia to identify predictor of depression and anxiety among caregivers of hospitalized patients with mental illness. The study has used a validated scales to assess the main study outcomes.
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Georgina Charlesworth, Xanthippe Tzimoula, Paul Higgs and Fiona Poland
Social networks are seen to influence the use of health and social care services. In a secondary analysis of data from a longitudinal study of befriending of carers of people with…
Abstract
Social networks are seen to influence the use of health and social care services. In a secondary analysis of data from a longitudinal study of befriending of carers of people with dementia, we studied the relationship between network type and support from family/ friends, voluntary sector befriending and residential/nursing care. Using Wenger's typology of social networks, findings suggest that the pattern of support use varies by differences in the structure of networks. It is recommended that questions on social networks should be widely incorporated into carers' assessments to help identify need for social support interventions and to enable the sensitive selection of appropriate types of carer support to be provided.
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Nancy Santiago De Jesus and Aurelie Maurice
France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric…
Abstract
Purpose
France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric conditions, the lack of appropriate structures and the shortage of skilled mental health professionals, but it also leaves families in critical situations. The purpose of this study is to explore the carers’ caregiving experiences and to suggest ways to organise educational programmes to support mental health carers in France.
Design/methodology/approach
The research was conducted from January 2018 to November 2019. It included French carers of patients with mental conditions. Recorded semi-structured interviews were used and findings were analysed through an inductive thematic analysis and regrouped into key themes.
Findings
Participants had overwhelming negative representations of “mental illness”. The fact that they were excluded from participating in the patient’s health management further added to their misconceptions around mental disability, it limited their communication with their family and amplified their burdens.
Research limitations/implications
There is an urgent need for carer empowerment; carers should be included in educational programmes, they should benefit from French Government subsidies and social-network assistance and receive quality assistance by trained mental health professionals. The critical situation of carers can only be addressed by combining these three steps and through the action of appropriate actors in the field of mental health, thus alleviating the current paradigm of psychiatric care in France.
Originality/value
Thousands of research papers regarding carers have been published in other countries. In addition yet, to the knowledge, only a few investigations on French mental health carers have been conducted to this day. The singularity of this research lies in the rare individual interviews, which provided us with first-hand testimonies of mental health carers in France. This data could be of vital aid for professionals and for policymakers when advocating for better support of carers in mental health.
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