Carer Organisations Research Articles

Enabling better carer involvement: A qualitative evaluation of the involvement service belonging to a carers organisation in the United Kingdom

Background: Globally, unpaid carers face economic and societal pressures. Unpaid carers’ support is valued at £132 billion a year in the United Kingdom (UK) alone. However, this care comes at a high cost for the carers themselves. Carers providing round the clock care are more than twice as likely to be in bad health than non-carers. These carers are therefore proportionately more likely to need statutory services such as health care provision. It is critical that carers are better supported to be involved in the shaping, delivery and evaluation of the services they receive. Unfortunately, qualitative evidence on how carer organisations can do this better is scarce. Methods: Working collaboratively with a community-based carers organization, we undertook a qualitative study. Purposive sampling was used to recruit 23 participants. Online, semi-structured, one-to-one interviews were conducted with carers, community organization staff and stakeholders to ascertain their experience and views on the involvement service. Results: Firstly, there are a range of benefits resulting from the involvement service. The carers see the service as an opportunity to connect with other carers and share their views and ideas. Secondly, staff and service providers also reported how involvement gave a platform for carers and was of value in helping them shape needs-led services. Thirdly, we found that barriers to good involvement include the lack of a clearly understood, shared definition of involvement as well as the lack of a diverse pool of carer representatives available for involvement activities. Conclusion: The findings from our study provide important insights into how carers, staff and service stakeholders view barriers and enablers to good involvement. The findings will be of interest to a range of community-based organizations interested in further involving members of their community in shaping the services they receive.

Informal carer involvement in the transition of medicines-related care for patients moving from hospital to home: a realist review protocol

IntroductionTransition of care for a patient between hospital and home can cause disruption to normal routines, increasing the risk of medicines-related harm. The transition from hospital to home is more...

Something Happened with the Way We Work: Evaluating the Implementation of the Reducing Coercion in Norway (ReCoN) Intervention in Primary Mental Health Care.

Current policies to reduce the use of involuntary admissions are largely oriented towards specialist mental health care and have had limited success. We co-created, with stakeholders in five Norwegian municipalities, the 'Reducing Coercion in Norway' (ReCoN) intervention that aims to reduce involuntary admissions by improving the way in which primary mental health services work and collaborate. The intervention was implemented in five municipalities and is being tested in a cluster randomized control trial, which is yet to be published. The present study evaluates the implementation process in the five intervention municipalities. To assess how the intervention was executed, we report on how its different elements were implemented, and what helped or hindered implementation. We assessed the process using qualitative methods. Data included detailed notes from quarterly progress interviews with (i) intervention coordinators and representatives from (ii) user organisations and (iii) carer organisations. Finally, an end-of-intervention evaluation seminar included participants from across the sites. The majority of intervention actions were implemented. We believe this was enabled by the co-creating process, which ensured ownership and a good fit for the local setting. The analysis of facilitators and barriers showed a high degree of interconnectedness between different parts of the intervention so that success (or lack thereof) in one area affected the success in others. Future implementation should pay attention to enhanced planning and training, clarify the role and contribution of service user and carer involvement, and pay close attention to the need for implementation support and whether this should be external or internal to services. It is feasible to implement a complex intervention designed to reduce the use of involuntary admissions in general support services, such as the Norwegian primary mental health services. This could have implications for national and international policy aimed at reducing the use of involuntary care.

Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers' own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient-carer relationship); (4) finances (including financial concerns, impact on work); (5) carers' internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers' internal processes and build appropriate support. Findings correspond with literature 1998-2008, indicating consistency in factors affecting carers and adding validity to findings. The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. This study is registered as PROSPERO CRD42019130279. This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Mental health nursing capability development: Perspectives of consumers and supporters.

Mental health nursing requires a specialist range of capabilities and values. In Australian contexts, the preparation of nurses to work in mental health settings has attracted criticism from government reviews, academics, and graduate nurses. Insufficient mental health content and clinical placement experience in undergraduate nursing courses have been central to this criticism. The study aim was to identify the areas and modalities of capability development of graduate mental health nurses, from the perspectives of end point users. In order to meet the aim, a four-item cross-sectional online survey with three additional and open-ended questions was developed. The questions were co-designed with consumer academics and reviewed by consumer and carer organizations. The survey was widely distributed across Australian consumer and carer organizations, with 95 useable responses. Findings indicated strong support for lived experience being integrated into teaching teams for nurses, as well as support for undergraduate direct entry for mental health nursing. Themed content from open-ended responses reflected the survey outcomes as well as prioritizing skill development to support better therapeutic relating and nurse self-care. Key findings included strong support for greater lived experience input into mental health nurse education, specialist undergraduate preparation and a focus on developing relational capabilities in the mental health nurse workforce.

Applying a dyadic outcomes approach to supporting older carers and care-recipients: A qualitative study of social care professionals in England.

There are an estimated 2 million older carers, aged 65 or over, in the UK. Older carers are more likely to care for a co-resident spouse/partner, provide high-intensity support and have their own health problems. The literature suggests that a 'dyadic outcomes approach' to social care (i.e. services and support that seek to understand and improve the quality of life of the older carer and the person they support, individually and together) may be especially beneficial for older carers. Such an approach may be applied in needs assessment and review, service evaluation, planning and delivery, or commissioning. However, there is a paucity of evidence of its effectiveness and feasibility in practice. In this qualitative study, we explored views of social care professionals in England on supporting older carers, as well as the feasibility, potential benefits and challenges of applying a dyadic outcomes approach into policy and practice. Overall, 25 professionals were interviewed between January and July 2021, including social workers, team leads, managers, commissioners and other representatives from local authorities, care providers and carer organisations. Findings indicate that there is limited focus on the specific needs of older carers in practice. Participants recognised the potential benefits of a dyadic approach, including the development of a holistic view that enables an effective response to supporting quality of life, for both carer and care-recipient, and building trust when working to support the caring dyad. Barriers to applying a dyadic approach included data protection and sharing, both within and between organisations; required workforce skills, experience and knowledge; and insufficient and competition-oriented adult social care funding that discourages collaborations between agencies. Despite the potential of the approach to improve the effectiveness of support for older caring dyads, these challenges need to be recognised and addressed if it is to be implemented.

Multiple Social Roles and Role Transference: Lessons Learned from a Chinese American Family Caregiver.

According to the International Alliance of Carer Organizations (2018), as the older adult population has increased, unpaid and family caregiving has become more common across all racial and ethnic groups in the United States and globally. Chinese American family caregivers who are influenced by the value of a familial piety might have a more complex experience on family caregiving (Cheng, Lam, Kwok, Ng, & Fung, 2013; Chien, Chan, & Morrissey, 2007; Tang, 2011; Wang, Shyu, Chen, & Yang, 2011). The call for social workers’ using culturally sensitive approaches to better assist Chinese American family caregivers has been long-standing (Chan & Chui, 2011; Lai, 2010). In my previous study, the culturally sensitive life story approach was examined and found effective in reducing Chinese American caregivers’ stress (Lun, 2019). During the research study, I collaborated with an elder Chinese American family caregiver using an interview process to help her narrate and construct meaning of her caregiving life story. Her life story provides insights on social role change and adaption. These insights help social workers obtain an in-depth understanding on the complexity of family caregiving.

Developing an applied model for making decisions towards the end of life about care for someone with dementia.

Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

The care capacity goals of family carers and the role of technology in achieving them

BackgroundAs global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC’s unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs’ care-related work goals, and describes how those goals do, or do not, link to technology.MethodsWe employed a sequential mixed-method approach using focus groups followed by an online survey about FCs’ goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants’ responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis.ResultsWe identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients’ changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization.ConclusionsWe conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of ‘burden’ towards a more ‘resilient’ and ‘sustainable’ model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers.

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

BackgroundOutcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool.MethodsParticipants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach.ResultsParticipants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire.ConclusionsThis study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.

Moving beyond the first response phenomenon

Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications Limitations included the relative lack of male carer participants and the convenience sample. Practical implications Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Mediators of burden and depression in dementia family caregivers: Kinship differences.

To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated. Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children). Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers. These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.

FAMILY, INTERGENERATIONAL, AND CAREGIVING ISSUES

Framed by an idealist ontology and relational constructionist perspective (Blaikie 2010), this qualitative study explores how family carers experience role and identity transition as they progress from ‘family member’ to ‘family carer’, to ‘post-carer’, with the latter reflecting the cessation of the caring role as the individual being cared for moves to or dies in a care home or dies at home. Such transitions approximate cumulative rites of passage (Van Gennep 1960, Turner 1969) comprising identity rebuilding and present practical and emotional challenges for family carers. In line with Barnhart and Penaloza (2013), we characterize family caring as a dynamic and situated, socially constructed group phenomenon, where the assisting functions of family, friends, and paid service providers create a family caring ensemble (FCE). Depth interviews were conducted with eight family carers, four females and four males, who had experienced loss in relation to their family caregiving role. Emergent themes relating to carers’ experiences of role and identity transitions and losses were induced from participants’ narratives (Spiggle 1994). We induced three phases of role and identity transition precipitated by multiple losses across the care giving life course, which we term reconfiguring, distancing and reconstituting. While the role and identity transition phases induced might suggest a linear transition from family member to family carer over time, they were in fact cumulative, multifaceted and overlapping. Each transition require carers to juggle multiple roles, which lead to chronic stress for the duration of the caregiving period and imply intensive identity re-building within and beyond family networks, while over time a sense of renewal and positive emerged as post carers refashioned identities within and beyond the family. We conclude with implications for carer organizations, service providers and policymakers.

The RANZCP guidelines for Schizophrenia: Why is our practice so far short of our recommendations, and what can we do about it?

The new RANZCP guidelines for the treatment of schizophrenia and related disorders highlights what we know works. In this paper, we examine why patients so often fail to benefit from this knowledge and why clinical practice falls so far short of the recommended standard. Instead of the continuous improvement that we expect of health care in general, in psychiatry we face an accelerating decline in systems of care. There has been a sustained underinvestment in public mental health care and a shared failure by State and Federal governments to construct and commit to a governance and funding model that can deliver the standard of care that is available in other major non-communicable diseases, and which we know is equally possible for severe mental illness. This paper sets out some of the reasons for the poor quality of care received by many people with schizophrenia and related disorders in Australia, and describes ways that care could be improved. In particular, we recommend an explicit statement of what constitutes an adequate standard of care, for people at all stages of these illnesses. This would help provide transparency about whether the care provided by mental health services achieves these benchmarks, and enable publication of results comparing the performance of different states and regional services. Patients and families, as well as professional, consumer and carer organizations would then be able to see clearly where the deficits are and demand resources and care that match the recommendations.

What aspects of intentional rounding work in hospital wards, for whom and in what circumstances? A realist evaluation protocol

IntroductionIntentional rounding (IR) is a structured process whereby nurses in hospitals carry out regular checks, usually hourly, with individual patients using a standardised protocol to address issues of positioning, pain,...

Using the Tuning Methodology to design the founding benchmark competences for a new academic professional field: the case of Advanced Rehabilitation Technologies

Designing innovative high quality educational programmes to meet the workforce needs in emerging interdisciplinary areas of practice can present challenges to academics, students, employers and industrial partners. This paper demonstrates how the Tuning Process successfully helped to construct benchmark learning outcomes and competences in the area of healthcare practice where advanced technologies are used to improve movement namely Rehabilitation Technologies (RTs). The paper also discusses the engagement of patients, carers and carer organisations within the development of competences. Due to changing demographics, limited resources and the availability of technology, rehabilitation technologies are starting to be used for the assessment and treatment of patients. However there are currently no European transnational Bachelor or Master programmes targeted at educating people for the design, development, use and evaluation of these technologies. The contemporary field is predominantly staffed and resourced by engineering scientists and clinicians who were primarily educated in their primary discipline. The first generations of rehabilitation technologists have established this specialist field through invention, perseverance, and collaborative working. However, there is now a recognition that new and complementary skill sets are required by future graduates, whether engineering scientists or clinicians, so as to better meet the needs of clients and the employment market whether in the domains of industry, research, academia or clinical practice. This project demonstrates how a group of European specialist rehabilitation technologists, supported by educationalists, collaborated to identify and develop the core competences and learning outcomes required by future Master’s (second cycle) graduates in this new discipline. Building on the work of the Tuning Process and applying the principles embedded in the Bologna Process, future employability needs are determined through an imaginative, technological and cost conscious entrepreneurial approach to education.
 Published online: 01 June 2016

Experiences of care by Australians with a diagnosis of borderline personality disorder.

Accessible summary Borderline personality disorder (BPD) is a complex and challenging mental health condition for the person and service providers who support them.This paper reports on the results of a survey of 153 people with a diagnosis of BPD about their experiences of attempting to receive support in managing this mental health condition. It provides their perceptions of a range of experiences not reported in the existing literature, including general practitioner roles, urban and rural differences, public and private hospital differences, and comparison of usefulness of support across multiple support types.People with a diagnosis of BPD continue to experience significant discrimination when attempting to get their needs met within both public and private health services. Further education for nurses and other health professionals is indicated to address pervasive negative attitudes towards people with a diagnosis of BPD. There is limited understanding of the experience of seeking and receiving treatment and care by people with a diagnosis of borderline personality disorder (BPD), their perceptions of barriers to care and the quality of services they receive. This study aimed to explore these experiences from the perspective of Australians with this diagnosis. An invitation to participate in an online survey was distributed across multiple consumer and carer organizations and mental health services, by the Private Mental Health Consumer Carer Network (Australia) in 2011. Responses from 153 people with a diagnosis of BPD showed that they experience significant challenges and discrimination when attempting to get their needs met within both public and private health services, including general practice. Seeking help from hospital emergency departments during crises was particularly challenging. Metropolitan and rural differences, and gender differences, were also apparent. Community supports were perceived as inadequate to meet their needs. This study provides data on a range of experiences not reported in existing literature, including general practitioner roles, urban and rural differences, public and private hospital differences, and comparison of usefulness of support across multiple support types. Its findings can help inform better training for health professionals and better care for this population.

Experiences of family carers of people diagnosed with borderline personality disorder.

There is limited understanding of the experience of family carers of people diagnosed with borderline personality disorder (BPD). This study aimed to explore their experiences of being carers, their attempts to seek help for the person diagnosed with BPD and their own carer needs. An invitation to participate in an online survey was distributed to carers across multiple consumer and carer organizations and mental health services, by the Private Mental Health Consumer Carer Network (Australia) in 2011. Responses from 121 carers showed that they experience significant challenges and discrimination when attempting to engage with and seek support from health services. Comparison with consumers' experiences (reported elsewhere) showed that these carers have a clear understanding of the discrimination faced by people with this diagnosis, largely because they also experience exclusion and discrimination. Community carer support services were perceived as inadequate. General practitioners were an important source of support; however, they and other service providers need more education and training to support attitudinal change to address discrimination, recognize carers' needs and provide more effective support. This study provides the first detailed account of BPD carers' experiences across a broad range of support needs and interactions with community support and health services.

Law Reform or Systemic Reform? Stakeholder Perceptions of Resource Constraints in Mental Health in Australia, New Zealand and Canada

This article examines resource constraints in the mental health systems in Australia, New Zealand and Canada in light of the results of a qualitative study analysing interviews with 65 representatives of consumer and carer organisations, lawyers, judges and mental health professionals conducted between September 2008 and December 2010. The interviews were analysed using grounded theory, and an unanticipated finding was that resource constraints in mental health law and practice emerged as the most discussed theme. The analysis revealed that participants were concerned about (1) the futility of law reform without the injection of adequate resources in their mental health systems; (2) the types of resources that they perceived were lacking; and (3) the consequences of those resource constraints on the operation of mental health systems at a systemic level. This paper highlights the importance of systemic factors in the development of mental health law, policy and practice.

‘More of a leg to stand on’: Views and usage of the Mental Capacity Act 2005 among staff of local Alzheimer's Society and carer organisations

Objectives: The Mental Capacity Act (MCA) 2005 was implemented in 2007 in England and Wales. It offers new opportunities for people to plan for any future loss of capacity and provides a framework for decision-making on behalf of people lacking capacity. This article explores the challenges staff in local voluntary organisations focusing on dementia and carers face when they offer information and advice connected to possible loss of decision-making capacity to people with dementia and carers. Method: A set of 17 qualitative interviews were undertaken with a purposively sampled voluntary sector staff in London in 2008–09. Framework analysis was used to delineate themes in the transcripts and identified themes were included in the iteratively developed coding framework Results: Interviews revealed that voluntary sector staff generally perceived the Act as largely benefiting people with dementia in the exercise of their rights. They also thought that carers would benefit from the Act's provisions, whilst their own involvement in advice, information-giving and referral to other sources of expertise in relation to the MCA differed according to their role and confidence. Voluntary sector staff's capability and interest in using the MCA vary; there should be no presumption of detailed knowledge, and resources relevant to the MCA might be need to be coordinated more effectively by this sector. Conclusion: Ongoing training, local coordination and auditing seem warranted. These could encompass the new safeguarding provisions of the MCA which may need to be highlighted as part of the welcome extension of rights conferred by the MCA.