An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems

Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers' emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.     

'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers' rights, not least to basic information to help them care for service users. 'Confidentiality smokescreens' may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.     

The role of family carers in the use of personal budgets by people with mental health problems

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012–2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health‐related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners’ assumptions about carers’ willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision‐making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

Young people supporting parents with mental health problems: experiences of assessment and support

The explosion of interest in young people as carers over the last decade and a half conceals the fact that there are still no reliable estimates of the number of young people with caregiving responsibilities. This is even more problematic in circumstances where the 'looked after' person has a mental health problem. In this study, we reflect on what can be done to identify, assess and support young people in these circumstances. We draw on selected findings from a study that has been examining the constituents of good assessment practice in work with family carers supporting relatives with mental health problems. The study embraces different carer groups but this paper concentrates on the experiences of young carers at one study site where Barnardo's and partner organisations had developed a joint initiative targeting young people who are looking after parents and relatives with mental health problems. Following a review of the literature about young people as carers, the paper describes how Barnardo's worked to support them through its young carers projects. Based on face-to-face interviews with the young people (N = 10) caring for a mother with mental health problems, the main part of the paper provides an account of how they talk about, make sense of and evaluate the support they have received through this combined initiative. The findings underscore the value of one particular young carers project, and provide clues about what lessons may be transferable to other similar projects.     

Unmet needs of persons with a severe and persistent mental illness and their relationship to unmet accommodation needs

This is a cross‐sectional study of unmet needs of persons enrolled in Australia's Partners in Recovery (PIR) initiative. It aimed to explore the unmet needs reported by persons with a severe and persistent mental illness (SPMI) and to examine the associations between unmet accommodation needs and other unmet needs. The study was undertaken in the Gippsland region of Victoria from February to May 2015. Data were collected from the administrative database for the PIR initiative in Gippsland, which was held by the Gippsland Primary Health Network. Data on unmet needs, as measured by the Camberwell Assessment of Needs Short Appraisal Schedule, were analysed using proportions and logistic regression. Psychological distress, daytime activities, company/someone to spend time with and employment and volunteering were the most commonly reported unmet needs. Participants with unmet accommodation needs were less likely to receive information on their condition or access other services. They also had unmet needs relating to food, money, transport, childcare, looking after home, physical health, psychological distress and self‐care. Supported accommodation may not be enough for persons with SPMI who have poor functioning skills and are incapable of looking after themselves. Services such as Housing First that have shown promising results need to be part of a comprehensive strategy to care for persons with severe and enduring mental illness.     

Scoping the field: services for carers of people with mental health problems

Mental ill health is very common. Most people with mental health problems live in the community, and as many as 1.5 million people in the UK may be involved in caring for a relative or friend with a mental illness or some form of dementia. Recent legislation and policy initiatives such as the National Strategy for Carers, and the National Service Frameworks for Mental Health and Older People emphasise the importance of providing support for this particular group of carers. The present paper reports the findings of a scoping study to identify what the research tells us about the effectiveness and cost-effectiveness of interventions for the carers of people with mental health problems, and also where there are gaps in the knowledge base. Some 204 evaluation studies were included in the review, just 13 of which had an economic component. The majority of studies were conducted in the USA, and were aimed at carers of people with Alzheimer disease or other forms of dementia. Overall, there was a lack of strong evidence to support any specific interventions, although almost all studies were able to identify some positive outcomes of services provided. In contrast to the relatively narrow approach to effectiveness adopted in most of the studies reviewed, the contributors to a consultation exercise perceived this concept in a far more rounded and holistic way. For them, the process of service delivery was as important as the outcome. There was relatively little research evaluating interventions and services singled out in UK policy initiatives as potentially useful in supporting this group of carers, and further evaluation studies are needed.     

Evaluating the impact of participatory art projects for people with mental health needs

Participatory art projects for people with mental health needs typically claim outcomes such as improvements in confidence, self-esteem, social participation and mental health. However, such claims have rarely been subjected to robust outcome research. This paper reports outcomes from a survey of 44 female and 18 male new art project participants attending 22 art projects in England, carried out as part of a national evaluation. Outcomes were quantified through self-completed questionnaires on first entry to the project, during January to March of 2006, and 6 months later. The questionnaires included three measures: empowerment, mental health [Clinical Outcomes in Routine Evaluation (CORE)] and social inclusion. Paired t-tests were used to compare overall change, and mixed model repeated measures analysis of variance to compare subgroups, including age, gender, educational level, mental health and level of participation. Results showed significant improvements in empowerment (P = 0.01), mental health (P = 0.03) and social inclusion (P = 0.01). Participants with higher CORE scores, no new stress in their lives and positive impressions of the impact of arts on their life benefited most over all three measures. Positive impressions of the impact of arts were significantly associated with improvement on all three measures, but the largest effect was for empowerment (P = 0.002) rather than mental health or social inclusion. This study suggests that arts participation positively benefits people with mental health difficulties. Arts participation increased levels of empowerment and had potential to impact on mental health and social inclusion.     

Social control agents or front-line carers for people with mental health problems: police and mental health services in Sydney,Australia

The relationship between mental health services and police and people who have mental health problems, are suicidal or are drug- and/or alcohol-affected is examined in this paper. A survey of 131 police officers in Sydney, Australia, revealed that more than 10% of police time is spent dealing with people with mental health problems. Nevertheless, police felt unsupported in this role, unprepared for it and torn between the competing demands experienced in their work. A lack of confidence in dealing with suicidal people and a belief that work with mentally disturbed people does not constitute valid police work are also reported. Managing people with mental disturbance is a major concern for police. Specifically, there are difficulties relating to: inadequate training and education; deficiencies in services/resources; time and resource over-utilization; communication, liaison and feedback problems, and frustration related to accessing mental health facilities/services. It is argued that police work involving mentally disturbed people is a valid and necessary role that complements law enforcement. In order to facilitate this aspect of police work, recommendations are made regarding education and collaborative working relationships between police and mental health professionals, which, in turn, could improve the care of mentally disturbed people in the community.     

Impact of a population‐wide mental health promotion campaign on people with a diagnosed mental illness or recent mental health problem

Objectives : To determine the impact of the Act‐Belong‐Commit mental health promotion campaign on people with a diagnosed mental illness or who had sought professional help for a mental health problem in the previous 12 months. Method : In 2013 and 2014, 1,200 adults in Western Australia were interviewed by telephone. The questionnaire measured campaign reach, impact on beliefs about mental health and mental illness and behavioural impact. Results : Campaign impact on changing the way respondents thought about mental health was significantly higher among those with a mental illness or who had sought help (41.4% vs 24.2%; p<0.001), as was doing something for their mental health as a result of their exposure to the campaign (20.5% vs 8.7%; p<0.001). Conclusions : The campaign appears to empower people with a mental illness or who recently sought help to take steps of their own to enhance their mental health.     

The role of telematics in assisting family carers and frail older people at home

The overall aim of the ACTION research project (Assisting Carers using Telematic Interventions to meet Older person's Needs) is to maintain or enhance the autonomy, independence and quality of life of frail older and disabled people and their family carers by providing information, advice and support in the home. The authors report on the first phase of evaluation conducted using a case-study approach to test the ACTION system in several family carers' homes in Sheffield, England. The results reflect the realities of conducting an applied research technology project and are discussed with reference to the government's recent national strategy for carers. The authors acknowledge the need for further evaluation studies to explore the key issues raised within this preliminary evaluation phase.     

Rural physical health care services for people with serious mental illness: A nursing perspective

Objective: To understand nurse perspectives on the physical health needs of their mental health clients and how well rural services are meeting their overall care needs. Design: Focus groups with semistructured format. Setting: Community mental health care in a regional and rural district of Queensland. Participants: Thirty‐eight nurses in public mental health care. Results: The major themes were (i) stigma of mental illness, (ii) barriers to accessing physical health care services, (iii) nurse adaptations under demands, and (iv) community and integration towards better overall health. Nurses integrate overall care and foster its continuity for people with physical and mental co‐morbidity and can be supported much better in sustaining this. Conclusion: Access and continuity of physical health care experienced by all Australians is exacerbated for people in rural areas. Physical health of people with serious mental illness residing in remote Australia needs to be a national health priority.     

A review of mental health literacy in Singapore

ABSTRACT

Mental health is a major concern throughout the world. The lifetime prevalence of mental health problems in Singapore for those aged 18 years and above was reported to be 12%. However, studies on mental health literacy are relatively scarce in Singapore. The aim of this paper is to provide a topical review of local studies on mental health literacy, people’s knowledge of, and attitude toward mental illness, and beliefs about mental health treatment. A narrative review of studies on mental health literacy in Singapore covering the period from 1995 to 2016 highlights the findings from various local studies about attitudes toward mental illness, belief about the causes, and help-seeking behavior. Findings revealed that many lay people are unable to recognize different types of mental disorders. Negative attitudes toward mental illness that hinders individuals from seeking professional treatment, and help-seeking, are the common themes that emerge from the findings. Health professionals have differing views about the causes and treatment of mental disorders. Findings also revealed that treatment seeking and attitudes and beliefs toward mental illness are related to mental health literacy. Implications for promoting mental health literacy are provided.