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Article
Publication date: 2 April 2010

Alex Fox

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…

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.

Details

Journal of Integrated Care, vol. 18 no. 2
Type: Research Article
ISSN: 1476-9018

Keywords

Article
Publication date: 26 February 2020

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…

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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.

Details

Tizard Learning Disability Review, vol. 25 no. 1
Type: Research Article
ISSN: 1359-5474

Keywords

Abstract

Details

Mental Health Review Journal, vol. 9 no. 4
Type: Research Article
ISSN: 1361-9322

Article
Publication date: 1 July 2005

Jill Davies

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…

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.

Details

Tizard Learning Disability Review, vol. 10 no. 3
Type: Research Article
ISSN: 1359-5474

Article
Publication date: 13 April 2011

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…

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.

Details

Tizard Learning Disability Review, vol. 16 no. 2
Type: Research Article
ISSN: 1359-5474

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Article
Publication date: 14 December 2015

Eleanor Bradley

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…

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”.

Details

Mental Health Review Journal, vol. 20 no. 4
Type: Research Article
ISSN: 1361-9322

Keywords

Article
Publication date: 1 June 2007

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…

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.

Details

Quality in Ageing and Older Adults, vol. 8 no. 2
Type: Research Article
ISSN: 1471-7794

Keywords

Article
Publication date: 16 July 2020

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…

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.

Details

The Journal of Mental Health Training, Education and Practice, vol. 15 no. 4
Type: Research Article
ISSN: 1755-6228

Keywords

Article
Publication date: 1 December 2010

Tracey Oliver, Joan Murphy and Sylvia Cox

People with dementia who feel included in decisions about their care show higher well‐being and positive adjustment to accepting care than those who feel their family make…

Abstract

People with dementia who feel included in decisions about their care show higher well‐being and positive adjustment to accepting care than those who feel their family make decisions for them (Bourgeois, 1991). Most carers want to involve the person with dementia in decision‐making and care arrangements, but many struggle because of the communication and cognitive problems associated with the condition. Research examined whether the Talking Mats framework could help people with dementia and their family carers feel more involved in decisions about managing their daily living. Eighteen couples (person with dementia and family carer) were asked to discuss how the person with dementia was managing their daily living activities using the Talking Mats framework (Condition A), and when having a typical conversation (Condition B). Each couple then completed a brief questionnaire separately to measure how involved they felt in both types of discussion. Both the person with dementia and their family carer felt more involved in discussions about managing daily living when using the Talking Mats framework than when having a typical conversation. Qualitative analysis of all discussions also offered insight into what people with dementia who are still living at home are managing in relation to their daily living. The study will contribute in a practical way to the current debate on how to involve people with dementia meaningfully in service planning. This will have implications for the organisation, delivery, and improvement of services to people with dementia.

Details

Housing, Care and Support, vol. 13 no. 3
Type: Research Article
ISSN: 1460-8790

Keywords

Article
Publication date: 15 March 2019

John Chiocchi, Gary Lamph, Paula Slevin, Debra Fisher-Smith and Mark Sampson

Carers of people with mental health problems present with high levels of burden, poor mental well-being and feelings of disempowerment by mental health services. The…

Abstract

Purpose

Carers of people with mental health problems present with high levels of burden, poor mental well-being and feelings of disempowerment by mental health services. The purpose of this paper is to establish whether providing a psychoeducation skill programme for carers would lead to an improvement of mental well-being, reduce the levels of burden that carers sometimes feel while caring for someone with mental illness and also to increase empowerment. This paper provides a service evaluation study of an innovative carer-led psychoeducational intervention that was undertaken.

Design/methodology/approach

This programme was initiated and led by a carer who had experienced a lack of service provision to support carers and families in understanding and caring for a relative with severe and enduring mental health diagnoses. A model of co-production was adopted with the carer who led this initiative working closely with an occupational therapist and consultant psychologist in its development and delivery. Data were collected to measure the impact of the training at five different time points. The measures employed to measure outcomes were the Warwick-Edinburgh Mental Well-being Scale, the Burden Assessment Scale and Family Empowerment Scale.

Findings

Results indicated improved well-being, reduced burden and increased family empowerment in carers who completed this peer-led carer initiative psychoeducational programme.

Research limitations/implications

This service evaluation study was conducted in a single site and in the site in which it was developed. The carer consultant who led this evaluation and development of the intervention was also the peer worker who delivered the interventions. Hence, the authors are unable to ascertain if the results reported are unique to the individual peer worker. The transferability of this programme and generalisability of the result should therefore be treated with caution and further replication of this model and research is required. This would be beneficial to be conducted in an alternative site from where it was developed, delivered by different facilitators and include a control group.

Practical implications

The evidence from this study indicates that carers are able and willing to attend a group psychoeducational programme. A high number of referrals to the programme in a relatively short timeframe indicates that there is significant demand for such a service. The implementation of the programme is relatively straightforward. The key challenges for practical implementation are to have the right carer to lead and deliver the programme and the right support system in place for them (financial and supervision). Co-production also is not without challenges, the peer worker and occupational staff need to ensure that mutually valued and respected working relationship should develop.

Originality/value

This is the first evaluation of the impact of a carer-led psychoeducation intervention for carers of people with mental health difficulties in secondary mental health services.

Details

The Journal of Mental Health Training, Education and Practice, vol. 14 no. 2
Type: Research Article
ISSN: 1755-6228

Keywords

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