Carers' experiences of involuntary admission under mental health legislation: systematic review and qualitative meta-synthesis.
ABSTRACT: BACKGROUND:Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. AIMS:We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. METHOD:We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. RESULTS:The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. CONCLUSIONS:Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.
Project description:BACKGROUND:Understanding patient experiences of detention under mental health legislation is crucial to efforts to reform policy and practice. AIMS:To synthesise qualitative evidence on patients' experiences of assessment and detention under mental health legislation. METHOD:Five bibliographic databases were searched, supplemented by reference list screening and citation tracking. Studies were included if they reported on patient experiences of assessment or detention under mental health legislation; reported on patients aged 18 years or older; collected data using qualitative methods; and were reported in peer-reviewed journals. Findings were analysed and synthesised using thematic synthesis. RESULTS:The review included 56 papers. Themes were generally consistent across studies and related to information and involvement in care, the environment and relationships with staff, as well as the impact of detention on feelings of self-worth and emotional state. The emotional impact of detention and views of its appropriateness varied, but a frequent theme was fear and distress during detention, including in relation to the use of force and restraint. Where staff were perceived as striving to form caring and collaborative relationships with patients despite the coercive nature of treatment, and when clear information was delivered, the negative impact of involuntary care seemed to be reduced. CONCLUSIONS:Findings suggest that involuntary in-patient care is often frightening and distressing, but certain factors were identified that can help reduce negative experiences. Coproduction models may be fruitful in developing new ways of working on in-patient wards that provide more voice to patients and staff, and physical and social environments that are more conducive to recovery. DECLARATION OF INTEREST:None.
Project description:BACKGROUND:The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia. METHOD:The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n?=?25), followed by a national online survey (Study 2; n?=?70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics. RESULTS:At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement. CONCLUSIONS:Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.
Project description:OBJECTIVES:Young people who have been removed from their family home and placed in care have often experienced maltreatment and there is well-developed evidence of poor psychological outcomes. Once in care, foster carers often become the adult who provides day-to-day support, yet we know little about how they provide this support or the challenges to and facilitators of promoting better quality carer-child relationships. The aim of this study was to understand how carers support the emotional needs of the young people in their care and their views on barriers and opportunities for support. DESIGN AND PARTICIPANTS:Participants were 21 UK foster carers, recruited from a local authority in England. They were predominantly female (86%), aged 42-65 years old and ranged from those who were relatively new to the profession (<12 months' experience) to those with over 30 years of experience as a carer. We ran three qualitative focus groups to gather in-depth information about their views on supporting their foster children's emotional well-being. Participants also completed short questionnaires about their training experiences and sense of competence. RESULTS:Only half of the sample strongly endorsed feeling competent in managing the emotional needs of their foster children. While all had completed extensive training, especially on attachment, diagnosis-specific training for mental health problems (eg, trauma-related distress, depression) was less common. Thematic analysis showed consistent themes around the significant barriers carers faced navigating social care and mental health systems, and mixed views around the best way to support young people, particularly those with complex mental health needs and in relation to reminders of their early experiences. CONCLUSIONS:Findings have important implications for practice and policy around carer training and support, as well as for how services support the mental health needs of young people in care.
Project description:AIMS:Planning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey. METHODS:The number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role. RESULTS:In 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1% v. 19.7% of carers) and less likely to assist with practical tasks (64.1% v. 86.6%) and activities of daily living (31.9% v. 48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers - the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0% v. 3.2%), and 35.0% did not know what services were available to them. CONCLUSIONS:Results reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.
Project description:BACKGROUND:The value of carer involvement has been extensively researched and promoted. However, the field lacks exploration of conceptual issues, which might help to explain why there are widespread difficulties in putting policy into practice in this area, as implementation rates remain low internationally. AIMS:This qualitative study explored patients', carers' and clinicians' perspectives on the role of carers in mental healthcare, particularly with regards to in-patient settings. METHOD:Sixteen focus groups were conducted with patients, carers and clinicians who have current or previous experience of in-patient settings. A thematic analysis was conducted on the transcripts, exploring two key domains: (a) what a 'carer' is, and (b) how the 'carer' role is described within the context of the hospital environment. RESULTS:Participants diverged in their opinions of what the 'carer' role entails, and the perceived helpfulness of it. Issues unique to the in-patient setting were identified, such as the role of the hospital environment in enabling or being a barrier to carer involvement. These differing perspectives and contextual factors had an impact on the position of carers in the hospital setting, as they could be viewed as helpful, a hindrance or as passive visitors, depending on the perspectives of clinicians. CONCLUSIONS:More clarity and agreement is needed between patients, carers and clinicians in terms of how the 'carer' role is defined. This has the potential to improve carers' experience of involvement in hospital settings.
Project description:International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2-4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (?2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The 'Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)' scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning.
Project description:Background:Involuntary admission or treatment for the management of mental illness is a relatively common practice worldwide. Enabling legislation exists in most developed and high-income countries. A few of these countries have attempted to align their legislation with the United Nations Convention on the Rights of Persons with Disabilities. This review examined legislation and associated issues from four diverse South Asian countries (Bangladesh, India, Pakistan and Sri Lanka) that all have a British colonial past and initially adopted the Lunacy Act of 1845. Method:A questionnaire based on two previous studies and the World Health Organization checklist for mental health legislation was developed requesting information on the criteria and process for involuntary detention of patients with mental illness for assessment and treatment. The questionnaire was completed by psychiatrists (key informants) from each of the four countries. The questionnaire also sought participants' comments or concerns regarding the legislation or related issues. Results:The results showed that relevant legislation has evolved differently in each of the four countries. Each country has faced challenges when reforming or implementing their mental health laws. Barriers included legal safeguards, human rights protections, funding, resources, absence of a robust wider health system, political support and sub-optimal mental health literacy. Conclusion:Clinicians in these countries face dilemmas that are less frequently encountered by their counterparts in relatively more advantaged countries. These dilemmas require attention when implementing and reforming mental health legislation in South Asia.
Project description:We aim to describe the health-related quality of life of informal carers and their experiences of primary care.Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.
Project description:BACKGROUND:Nonprofessional carers who provide support to an individual with a psychiatric or neurological disorder will often themselves experience symptoms of stress, anxiety, or low mood, and they perceive that they receive little support. Internet-based interventions have previously been found to be effective in the prevention and treatment of a range of mental health difficulties in carers. OBJECTIVE:This review seeks to establish the status of internet-based interventions for informal (nonprofessional) carers of people with psychiatric or neurological disorders by investigating (1) the number and quality of studies evaluating the efficacy or effectiveness of internet-based carer interventions and (2) the impact that such interventions have on carer mental health, as well as (3) how internet-based interventions compare with other intervention types (eg, face-to-face treatment). METHODS:A systematic literature search was conducted in January 2019 using the EMBASE (1974-present), Ovid MEDLINE (1946-present), PsychARTICLES, PsychINFO (1806-present), and Global Health (1973-present) databases, via the Ovid Technologies database. Search terms included carer, caregiver, online, technology, internet-based, internet, interactive, intervention, and evaluation. Studies selected for inclusion in this review met the following predetermined criteria: (1) delivering an intervention aimed primarily at informal carers, (2) carers supporting individuals with psychiatric disorders, stroke, dementia, or brain injury, (3) the intervention delivered to the carers was primarily internet based, (4) the study reported a pre- and postquantitative measure of carer depression, anxiety, stress, burden, or quality of life, (5) appeared in a peer-reviewed journal, and (6) was accessible in English. RESULTS:A total of 46 studies were identified for inclusion through the detailed search strategy. The search was conducted, and data were extracted independently by 2 researchers. The majority of studies reported that 1 or more measures relating to carer mental health improved following receipt of a relevant intervention, with interventions for carers of people with traumatic brain injury showing a consistent link with improved outcomes. CONCLUSIONS:Studies investigating internet-based interventions for carers of individuals with diverse psychiatric or neurological difficulties show some evidence in support of the effectiveness of these interventions. In addition, such interventions are acceptable to carers. Available evidence is of varying quality, and more high-quality trials are needed. Further research should also establish how specific intervention components, such as structure or interactivity, contribute to their overall efficacy with regard to carer mental health.
Project description:Crisis resolution teams (CRTs) can provide effective home-based treatment for acute mental health crises, although critical ingredients of the model have not been clearly identified, and implementation has been inconsistent. In order to inform development of a more highly specified CRT model that meets service users' needs, this study used qualitative methods to investigate stakeholders' experiences and views of CRTs, and what is important in good quality home-based crisis care.Semi-structured interviews and focus groups were conducted with service users (n = 41), carers (n = 20) and practitioners (CRT staff, managers and referrers; n = 147, 26 focus groups, 9 interviews) in 10 mental health catchment areas in England, and with international CRT developers (n = 11). Data were analysed using thematic analysis.Three domains salient to views about optimal care were identified. 1. The organisation of CRT care: Providing a rapid initial responses, and frequent home visits from the same staff were seen as central to good care, particularly by service users and carers. Being accessible, reliable, and having some flexibility were also valued. Negative experiences of some referral pathways, and particularly lack of staff continuity were identified as problematic. 2. The content of CRT work: Emotional support was at the centre of service users' experiences. All stakeholder groups thought CRTs should involve the whole family, and offer a range of interventions. However, carers often feel excluded, and medication is often prioritised over other forms of support. 3. The role of CRTs within the care system: Gate-keeping admissions is seen as a key role for CRTs within the acute care system. Service users and carers report that recovery is quicker compared to in-patient care. Lack of knowledge and misunderstandings about CRTs among referrers are common. Overall, levels of stakeholder agreement about the critical ingredients of good crisis care were high, although aspects of this were not always seen as achievable.Stakeholders' views about optimal CRT care suggest that staff continuity, carer involvement, and emotional and practical support should be prioritised in service improvements and more clearly specified CRT models.