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1 – 10 of 507I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the…
Abstract
I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.
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Angela Burrows, Claire Warner, Jennifer Heath and Saskia Keville
Mental health (MH) and caring can be demanding for those directly and indirectly impacted. An under-researched area is that of professionals’ personal experiences of caring for a…
Abstract
Purpose
Mental health (MH) and caring can be demanding for those directly and indirectly impacted. An under-researched area is that of professionals’ personal experiences of caring for a loved one with MH difficulties. This study aims to provide an in-depth exploration of psychologists’ experiences of caring and its impact on clinical practice.
Design/methodology/approach
A total of 11 psychologists with experiences of caring for a loved one with a diagnosed MH condition and/or MH distress participated in semi-structured interviews focused on caring experiences and its impact. Transcripts were analysed using thematic analysis.
Findings
Themes identified were as follows: personal and professional roles; the emergence of a carer identity; carer stress and strain; impact on professional practice; and dual positioning.
Originality/value
This study highlighted the knowledge and value of listening to professionals with lived experiences. Their ability to understand stigmatisation through personal caring experiences may facilitate the mitigation of this for vulnerable people attending clinical services.
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Siu Chan and Ying Heidi
Despite the rich literature on the effects of parental mental health problems on child development, the needs of children of mentally ill parents have been overlooked in both…
Abstract
Despite the rich literature on the effects of parental mental health problems on child development, the needs of children of mentally ill parents have been overlooked in both research and services. This study investigated the needs of a neglected group, namely Chinese adolescent children of parents with schizophrenia, in order to gain insights into the design of programmes for these adolescents. In‐depth interviews were conducted individually with five Chinese adolescent girls whose mother or father was diagnosed with schizophrenia. Analysis of the interview data revealed four common themes: stigma and discrimination; mixed feelings of love and anger; the role of being a carer; and positive gains. The results shed light on the importance of taking cultural context into consideration when providing services for these children and further conducting research in this area. Although mental health problems are regarded as a taboo and associated with shame in Chinese culture, these children, out of a respect for their parents (‘filial piety’1), showed a strong sense of loyalty to their parents and suppressed their anger and sorrow for their parents' sake. Implications for social services for children whose parents have mental health problems and suggestions for future research are discussed.
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Stephen Linacre, Jessica Green and Vishal Sharma
Carers of people with eating disorders (EDs) experience high levels of burden which can lead to clinical levels of depression and anxiety, high levels of expressed emotion and can…
Abstract
Purpose
Carers of people with eating disorders (EDs) experience high levels of burden which can lead to clinical levels of depression and anxiety, high levels of expressed emotion and can lead to a non-conducive environment to support recovery. The Maudsley Method skills-based workshops can empower carers to support people with ED to move towards recovery, reduce carer burden and high levels of distress. The paper aims to discuss these issues.
Design/methodology/approach
Adaptations have been made to the Maudsley Method skills based workshops to include evidence based approaches from cognitive remediation therapy; mindfulness and acceptance commitment therapy. The adapted workshops were assessed via a pilot study with ten carers of people with ED using a mixed method design. The Experience of Caregiving Inventory and SF-36 were used to assess aspects of caregiving and carer wellbeing, respectively pre and post intervention. Thematic analysis was used to evaluate carers’ views on the intervention.
Findings
Results indicated that carers reduced their level of burden particularly in their experience of stigma, dependency and loss. Furthermore, positive aspects of the relationship with the person with the ED improved. Thematic analysis was used to obtain feedback from carers of the workshops. Qualitative data identified that carers improved their self-awareness, understanding of ED and the techniques they could use, and increased their social support.
Research limitations/implications
Further research is required to compare the original workshops with this adapted intervention.
Originality/value
Although this is a pilot study, the results suggest that further evidence based interventions could be added to the Maudsley Method approach to support carers.
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Amanda Wheeler, Amary Mey, Fiona Kelly, Laetitia Hattingh and Andrew K. Davey
The purpose of this paper is to explore the potential approaches to continuing education and training delivery for community pharmacists to equip them to support mental health…
Abstract
Purpose
The purpose of this paper is to explore the potential approaches to continuing education and training delivery for community pharmacists to equip them to support mental health consumers and carers with illnesses such as depression and anxiety.
Design/methodology/approach
Review of national and international literature about community pharmacists’ roles, beliefs and attitudes towards mental health, continuing education delivery for the workforce and training recommendations to equip pharmacy workforce.
Findings
Training involving consumer educators was effective in reducing stigma and negative attitudes. Interactive and contextually relevant training appeared to be more effective than didactic strategies. Narratives and role-plays (from the perspective of consumers, carers and health professionals) are effective in promoting more positive attitudes and reduce stigma. Flexible on-line delivery methods with video footage of expert and consumer narratives were preferable for a cost-effective programme accessible to a wide community pharmacy workforce.
Originality/value
There is a clear need for mental health education for community pharmacists and support staff in Australia. Training should target reducing stigma and negative attitudes, improving knowledge and building confidence and skills to improve pharmacy staff's perceived value of working with mental health consumers. The delivery mode should maximise uptake.
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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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Sarah Marie Nogues and Diane-Gabrielle Tremblay
As employed carers tend to experience work interruptions and conflict between work and care, especially women, this paper aims to assess the availability and accessibility of…
Abstract
Purpose
As employed carers tend to experience work interruptions and conflict between work and care, especially women, this paper aims to assess the availability and accessibility of carer-friendly workplace policies (CFWPs) in Quebec workplaces.
Design/methodology/approach
An online survey was distributed to members of the Association of Human Resources Management Counsellors in Quebec. The authors used a validating quantitative data design. The data was collected between October 2019 and the end of February 2020 and the questionnaire yielded 122 valid responses.
Findings
Adult/elder care responsibilities remain systematically perceived less important than childcare or general work-life balance needs. The current distribution of CFWPs within Quebec workplaces is unlikely to ensure carers sufficient support to prevent or significantly mitigate negative repercussions. Notable differences were found between organization type and size.
Practical implications
There is a need for expanding CFWPs through increased support services, educational workshops, broader access to flexible work arrangements and manager training.
Social implications
The results support recent research findings pointing that women with caring responsibilities face important opportunity costs and risk falling in precariousness. Carers should be able to maintain a social income from other sources to compensate a reduced activity on the labor market.
Originality/value
By investigating the availability of CFWPs in Quebec workplaces, this paper adds insights regarding the availability and access to CFWPs regionally and in small and medium size workplaces, rather than identifying best practice from workplaces across the globe. Workplace policies are analyzed for adult/elder care specifically.
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The safeguarding vulnerable groups bill aims to improve the system of checks on staff and volunteers who want to work in social care, health or education. However, it creates…
Abstract
The safeguarding vulnerable groups bill aims to improve the system of checks on staff and volunteers who want to work in social care, health or education. However, it creates different levels of protection for children and for vulnerable adults. This article sets out the concerns expressed by a small coalition of disability charities that argued for improvements to the bill during its passage through Parliament. In particular, they wished to rectify the bill's failure to provide for mandatory checks on staff working privately for vulnerable adults who lack the capacity to manage their own affairs. These arguments were opposed by carers' organisations that wanted to avoid increasing the regulatory burden on carers. We critically examine these arguments, and ask whether there is a conflict of interests between carers and vulnerable adults.
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Louise Ritchie, Anna Jack-Waugh, Elsa Sanatombi Devi, Binil V, Anice George, Joyce Henry, Clarita Shynal Martis, Debjani Gangopadhyay and Debbie Tolson
Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to…
Abstract
Purpose
Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.
Design/methodology/approach
Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.
Findings
The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.
Research limitations/implications
There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.
Practical implications
The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.
Originality/value
This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.
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