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Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Introduction Methods Consumer and Community Involvement Results Conclusion Plain language summary The purpose of this study was to examine the feasibility of adapting and translating an evidence‐based occupational therapist‐delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.This study took place in a not‐for‐profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one‐on‐one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.Adapting a community‐based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence‐based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual. [ABSTRACT FROM AUTHOR]

There is currently limited information about the impact and experiences of a suicide attempt on the well‐being of a person providing care before, during, or after the attempt. Scant evidence available suggests that providing care has a profound impact on the support person or carers' own physical and psychological health; they may experience adverse health, financial, and functional outcomes, collectively described as 'caregiver burden'. This project sought to understand insights into the experience of providing care for someone who has previously attempted suicide. The larger study was designed in three phases consisting of an online survey, semi‐structured interviews, and a follow‐up survey. This paper reports the qualitative findings of the interviews which were thematically analysed. Two symbiotic themes emerged: the lived experience of caring and the impact of engagement and support from the healthcare system. The authors concluded that that the carer position is a multidimensional role involving informal agreements and situational or time‐based support. Further, awareness of this shifting relationship needs to be embedded in the provision of care by health professionals following a suicide attempt. Recommendations for enhanced health system response are proposed. [ABSTRACT FROM AUTHOR]

The focus of this paper is the impact on patients and parents of being involved in training events for health professionals. A review of the literature is presented and reveals that most studies have previously focused on the impact for the audience of patient and carer involvement in training. Following this review the authors report on an adolescent eating disorders service that involves patients and their parents in a number of training events and feedback obtained about the impact of involvement on these participants. The feedback was generally positive, both for patients and parents, and a number of themes were highlighted. The paper ends with some questions that may stimulate further investigation in this area. Copyright © 2006 John Wiley & Sons, Ltd and Eating Disorders Association. [ABSTRACT FROM AUTHOR]

Health and social care services are changing – and this change is radical. Service user and carer involvement has been a key aspect of health and social care policy for a number of years. In terms of the National Health Service (NHS), this has been significantly strengthened by the report ‘High Quality Care for All’. The NHS will no longer be a monolith dictating what services it offers. It is beginning to take seriously the views of its consumers: the patients, service users and carers. The NHS is starting to put the patient experience at the centre of everything it does, and its regulators are asking for evidence of public and patient involvement. This process may yet prove to be one of the NHS' greatest challenges as it transforms to prioritize the consumer viewpoint. Social care, though further down the line in relation to involvement, is now responding to the relatively new personalization agenda. This paper will consider what the university sector can do to embed the consumer and service culture within the education of health and social care professionals. It looks at the challenges of involvement and required culture change, highlighting the key points to address in the early and middle stages of involvement from a university office's perspective. It includes examples of consumer involvement in teaching, assessment and the selection of students and how their input is starting to make a difference. Finally, the paper outlines what is needed in a development office to establish and support effective service user and carer involvement on health and social care courses in higher education. The article concludes by acknowledging that there is much more work that needs to be done in this field to embed the work of a development office, but that early steps have been promising. [ABSTRACT FROM AUTHOR]

clarke cl, keady j, wilkinson h, gibb ce, luce a, cook a & williams l (2010) Journal of Nursing and Healthcare of Chronic Illness 2, 102-112 Dementia and risk: contested territories of everyday life Aims. The project aimed to understand the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. Background. This paper addresses a gap in the literature by embedding constructions of risk within everyday events and social contexts, and communicates such constructions through the voices of people with dementia, carers and practitioners. Method. This symbolic interactionalist study involved data collection by interview with 55 people with dementia (sometimes twice), and their nominated carer and practitioner. The sample was drawn from three regions of the United Kingdom. Data were collected during 2004. Conclusions. Five 'contested territories' of everyday living with dementia are outlined in this paper: friendships, smoking, going out, domestic arrangements, and occupation and activity. These contested territories are purposeful and allow for sense making, maintenance of self, claiming and relinquishing decision making, and creating purpose(lessness) in people's lives. Relevance to clinical practice. Assessing and managing risk in a way that respects the dynamics and purposes of contested territories will support care that is person centred, and moreover respectful of the relationships that contribute to maintaining the individual's sense of self and purpose. [ABSTRACT FROM AUTHOR]

This paper is about carers; a family member or members who provide unpaid care to a loved one with a chronic condition. Caring for someone who is chronically ill permeates every aspect of life. Dreams may be shattered, plans for the future may have to be radically altered or shelved permanently. Psychological stress is common, but many carers find it difficult to access services. Resources are there to support the person diagnosed, or, on treatment. What resources are directed to the care and support of carers? Drawing on relevant literature and my own clinical experience I give examples of the demands, often unrelenting, and difficulties carers face. I suggest some interventions that can support and facilitate carers, enabling them to continue their role in a healthy, life giving manner. [ABSTRACT FROM AUTHOR]

This paper presents a research team's experience using a virtual steering group to manage a research project. The main research project was concerned with the evaluation and development of interprofessional working among health and social care staff across primary and secondary care in the United Kingdom, with a focus on older people receiving intermediate care. Intermediate care is a service aimed at preventing unnecessary hospital admission; supporting early discharge from hospital; and reducing or delaying the need for residential care in the community. Intermediate care covers multi-agency and interprofessional working across the continuum of care. We examine one aspect—the use of a virtual steering group, which is an innovative approach aimed at facilitating user and carer participation in the research in a supportive and less intimidating way. The research team includes academics, practitioners, older people and carers, and representatives from the voluntary sector—all are equal members. The team believes it is important to actively involve clients and their carers in the development and direction of research because they can provide a unique perspective ensuring that the research addresses issues of importance to them as service users. We examine and discuss the importance of preparation, support, and training to meaningfully engage in the virtual steering group and the direction of this research. The paper concludes by making recommendations about this model of involving service users in research. [ABSTRACT FROM AUTHOR]

Objective: This paper reports on a study of the experiences of patients and carers discharged from the Townsville General Hospital into rural and remote communities in North Queensland. Design: The findings presented in this paper are drawn from post-discharge in-depth, qualitative interviews of both patients and carers. Results: The findings indicate the importance of examining the lived experience of both patients and carers in attempting to understand the impact of current discharge practices. Conclusion: We conclude that carers are providing the bulk of post-discharge care of patients – a difficult role in which the difficulties are exacerbated when the patient or the carer or both is a long way from the home community. [ABSTRACT FROM AUTHOR]

Background: Professional caregiving relationships are central to quality healthcare but are not always developed to a consistently high standard in clinical practice. Existing literature on what constitutes high‐quality relationships and how they should be developed is plagued by dyadic conceptualisations; discipline, context and condition‐specific research; and the absence of healthcare recipient and informal carer voices. This study aimed to address these issues by exploring how healthcare recipients and carers conceptualise good professional caregiving relationships regardless of discipline, care setting and clinical condition. Design: A qualitative story completion approach was used. Participants completed a story in response to a hypothetical stem that described a healthcare recipient (and, in some instances, carer) developing a good relationship with a new healthcare provider. Stories were analysed using reflexive thematic analysis. Participants: Participants were 35 healthcare recipients and 37 carers (n = 72 total). Results: Participants' stories were shaped by an overarching discourse that seeking help from new providers can elicit a range of unwanted emotions for both recipients and carers (e.g., anxiety, fear, dread). These unwanted emotions were experienced in relation to recipients' presenting health problems as well as their anticipated interactions with providers. Specifically, recipient and carer characters were fearful that providers would dismiss their concerns and judge them for deciding to seek help. Good relationships were seen to develop when healthcare providers worked to relieve or minimise these unwanted emotions, ensuring healthcare recipients and carers felt comfortable and at ease with the provider and the encounter. Participants positioned healthcare providers as primarily responsible for relieving recipients' and carers' unwanted emotions, which was achieved via four approaches: (1) easing into the encounter, (2) demonstrating interest in and understanding of recipients' presenting problems, (3) validating recipients' presenting problems and (4) enabling and respecting recipient choice. Participants' stories also routinely oriented to temporality, positioning relationships within recipients' and carers' wider care networks and biographical and temporal contexts. Conclusion: The findings expand our understanding of professional caregiving relationships beyond dyadic, static conceptualisations. Specifically, the findings suggest that high‐quality relationships might be achieved via a set of core healthcare provider behaviours that can be employed across disciplinary, context and condition‐specific boundaries. In turn, this provides a basis to support interprofessional education and multidisciplinary healthcare delivery, enabling different healthcare disciplines, specialties, and teams to work from the same understanding of what is required to develop high‐quality relationships. Patient or Public Contribution: The findings are based on stories from 72 healthcare recipient and carer participants, providing rich insight into their conceptualisations of high‐quality professional caregiving relationships. [ABSTRACT FROM AUTHOR]

Background Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. Objectives The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia ( SHIELD Carer Supporter Programme). Design Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed. Setting and participants Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. Results Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. Discussion and conclusions Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research. [ABSTRACT FROM AUTHOR]

Aim Online advertising is a new frontier in research recruitment and Google Adwords ( GA) is one method of online advertising. Only a handful of studies, however, have described its cost and effectiveness and none have focused on older adults. The aim of this paper is to describe a GA campaign used to recruit family carers of people with dementia and provide insight for researchers planning to use GA to recruit other older adults. Method A GA campaign was used to recruit family carers of people with dementia to a cross-sectional study of wellbeing. Results The ads were viewed more than 450,000 times in a six-week period, but only 49 surveys were completed, at a cost of $122 per survey. Conclusion GA has promise, but much remains to be understood about how to maximize its potential in ageing research. Recommendations for the design of future GA campaigns are provided. [ABSTRACT FROM AUTHOR]

Objective This paper aims to describe 'Cognitive Existential Couple Therapy' (CECT), a novel couples-based intervention for men with early stage prostate cancer (PCa) and their partners, and to report preliminary findings from a pilot study that investigated the acceptability and feasibility of the intervention and the measures to be used in a subsequent randomised controlled trial. Methods A manualised CECT programme was delivered to 12 couples facing a diagnosis of PCa within the previous 12 months by psychiatrists and clinical psychologists. Participants completed measures of psychological distress, marital function and coping pattern before and after CECT. Semi-structured interviews were conducted with nine couples shortly after the completion of CECT. Results The application of CECT was both feasible and acceptable as indicated by favourable participant compliance (10 of the 12 couples attended all six designated sessions), completion of measures before and after CECT and participation in semi-structured interviews by nine couples. Preliminary results included reduced levels of avoidance and hyperarousal after the programme, with this effect stronger in partners than in patients. Interviews demonstrated that couples valued the therapist's contribution to their overall care. Conclusions Previous research suggests that a couple-focused psychological intervention is desirable in the context of early stage PCa. This pilot study has established that CECT is acceptable, feasible and valued by couples facing a recent PCa diagnosis and demonstrates a potential for reduced psychological distress following CECT. A randomised controlled trial is currently being undertaken to validate the efficacy of this novel approach. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer. Background. Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design. Systematic review. Methods. Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination. Conclusion. Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study is to describe carers’ and nurses’ appraisals of workload in care of frail elderly awaiting nursing home (NH) placement. Background: Carers’ workload of care for frail elderly awaiting NH placement has been studied separately from that of nurses’ workload. The literature neither addressed a comparison of carers’ and nurses’ appraisals of psychological and physical workloads nor the most strenuous factors common to the workloads of both nurses and carers in care of the same elderly person. The terms ‘carers’ and ‘nurses’ in this paper refer to informal caregivers and to both enrolled nurses and Registered Nurses respectively, when no particular one is stated. Method: The sample comprised 11 nurses and 11 carers paired based on care provided to the same elderly person awaiting NH placement in Norway. Data collected by a workload-scale was analyzed by descriptive statistics. Data collected by individual interviews were analyzed by qualitative content analysis. Carers’ and nurses’ appraisals of workload were compared and contrasted and most strenuous factors described. Findings: The findings show that both carers and nurses rated workload levels maximum. Carers’ highest ratings concerned psychological workload, while nurses’ highest ratings concerned physical workload. The workload ratings concerning elderly with advanced dementia disease were most similarly aligned. Qualitative content analysis showed three categories that describe the most strenuous factors common to the workloads of both carers and nurses. These were feeling responsible, burdened and ambivalent. Conclusion: This study reports carers’ and nurses’ appraisals of workload in care of frail elderly awaiting NH placement. The results show many similarities and some differences. These results may help guide policy development to address resource allocations to elderly care. Further research is needed to address workloads of care for elderly awaiting NH placement. [ABSTRACT FROM AUTHOR]

There is increasing emphasis on enhancing consumer and carer participation in the planning and provision of mental health services. However, health professionals, consumers, and carers have different perceptions about what constitutes optimal care; identifying, negotiating, and meeting their respective needs can be challenging. The aim of the paper is to highlight the challenges of facilitating carer participation in daily practice and emphasize the broader issues that would benefit from more extensive discussion among health professionals. By examining the strategies used to enhance consumer participation, there is the potential to avoid many of the mistakes of the past and create a flexible and responsive framework to increase carer involvement. The authors anticipate that this discussion will resonate with many clinical staff as well as carers themselves. Identifying barriers to carer participation opens the way to promoting collaboration and enhancing care. [ABSTRACT FROM AUTHOR]

Recent policy statements that address the future priorities for nurse education have emphasized that service users and carers should be actively engaged in partnerships with education professionals in all aspects of the curriculum. The development of this agenda is well advanced; however, examples of ‘how to do it’ are sparse. The development of a strategy to involve users and carers in the design and delivery of the Diploma of Higher Education in Nursing at Napier University provided an opportunity to evaluate the process of developing partnerships in this area of nurse education. This paper presents the findings from a process evaluation from the various standpoints of the key interest groups. The overall project and evaluation is outlined, along with methodological and practical issues surrounding this type of ‘collaborative’ evaluation. The importance and satisfaction of practical aspects of the project are examined. The issues of representativeness, expertise in ‘involvement’ and the importance of the ‘process’ of involvement are explored. Finally, the challenges to developing ‘meaningful involvement’ that goes beyond ‘classroom involvement’ in nurse education are identified and discussed. [ABSTRACT FROM AUTHOR]

Key points: The focus on living well with dementia encourages a more positive and empowering approachThe right support can improve the experience of living with dementiaAn holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well‐being is essentialEnabling people to live better requires a broad approach that encompasses both health and social systems and the wider community [ABSTRACT FROM AUTHOR]

Reactions to caregiving and depression affect a carer's ability to continue in their caring role. This paper examines the relationship between reactions to caregiving and depression in carers of frail, older people and is a cross-sectional study of carers of community-living people ( ≥70 years), identified as frail, who completed a postal questionnaire. Reactions to caregiving were evaluated using the Caregiver Reaction Assessment. Anxiety and depression symptoms were measured using the Hospital Anxiety and Depression Scale. Borderline depressive symptoms were reported in 15% of carers, and 10% had abnormal depressive symptoms. Anxiety symptoms in the carers were slightly higher at 24% and 12%, respectively. Multiple regression indicated that the impact on carers' daily schedules (β = 1.419, P = 0.001; β = 1.162, P = 0.025) and their health (β = 1.509, P = 0.007; β = 1.850, P = 0.006) as a result of caregiving explained 49% of the variance in carers' depressive symptoms (P < 0.001) and 42% of the variance in their anxiety symptoms (P < 0.001). Specific reactions to caregiving are important predictors of depressive and anxiety symptoms in carers of frail, older people. Regular carer support services and targeted health-care initiatives could alleviate or lessen negative reactions associated with caregiving, such as depression. [ABSTRACT FROM AUTHOR]

Title. Psychosocial interventions for non-professional carers of people with Parkinson’s disease: a systematic scoping review. Aim. This paper is a report of a scoping review to systematically identify and collate the evidence on psychosocial interventions for non-professional carers of people with Parkinson’s disease. Background. Carers are critical to people with Parkinson’s disease maintaining independent living and quality of life. Parkinson’s disease imposes a challenging constellation of symptoms and no summary of effective interventions for carers and their unique support needs exists. Data sources. Thirty electronic databases were searched from their inception to July 2006, and bibliographies and specific internet sites were scanned. Methods. Eligible studies were categorized according to design, type of economic evaluation where applicable, number of participants, country of evaluation, intervention, orientation, provider, setting, method of delivery, carer population, patient population, carer outcomes, patient outcomes and authors’ conclusions. Data were extracted by one reviewer and checked by another reviewer; discrepancies were resolved through discussion or arbitration by a third reviewer. Findings. Thirty studies met the inclusion criteria. Most investigated relatively unique interventions involving multiple elements; the majority were not aimed primarily at carers but were embedded in patient treatment programmes. Many were pilot studies, employing weak research designs and involving very small numbers of participants and most were not designed to assess the clinical or cost effectiveness of the intervention for the carers. Conclusion. Several interventions merit further investigation but there is currently little evidence to show which approaches are effective and cost effective in supporting carers. Future studies need to employ appropriate and rigorous research designs with adequate samples and outcome measures, and with more focus on the carer. [ABSTRACT FROM AUTHOR]

Background: Informal carers of people with dementia report having unmet needs for support and few supportive interventions have been shown to be effective. There is a need to develop needs assessment instruments and supportive interventions with a holistic and person‐centred approach to meet the various and complex needs of carers. The aim of this study was to provide an overview of carers' support needs when caring for people with dementia with the objectives to map and synthesise knowledge on key concepts of carers' support needs. Methods: A scoping review methodology was used. A literature search was conducted in PsycINFO, CINAHL, PubMed and EMBASE between January 2007 and October 2019. Three authors independently selected articles meeting the inclusion criteria, and data were extracted using a matrix developed for that purpose. Inductive content analysis was used to synthesise key concepts of carers' support needs. Results: The search identified 2748 articles after removing duplicates, and 122 articles were included in the mapping of carers' support needs. Synthesising carers' support needs indicated that the full extent of support needs emerges in the interaction between the carer and the person cared for and that it is possible to categorise support needs into four key concepts related to: 1) the carer as a person, 2) managing being a carer, 3) providing care, and 4) knowledge of dementia. Conclusion: The findings of this study help to map a framework describing carers' support needs that may guide the development of future needs assessment instruments and supportive interventions. [ABSTRACT FROM AUTHOR]

Trauma‐informed care is an approach to the delivery of mental health care based on an awareness of the high prevalence of trauma in the lives of people accessing mental health services, the effects of trauma experiences and the potential for trauma or re‐traumatization to occur in the context of care. Across Australia, inquiries and reports have increasingly indicated an urgent need for mental health services to become trauma‐informed. However, how Australian mental health services should deliver trauma‐informed care is not well documented. Efforts towards trauma‐informed care in any setting require engagement with those who receive care. This qualitative study used an experience‐based co‐design methodology to explore the perspectives of consumers of mental health services in Australia and their family members, in relation to the question 'what would a trauma‐informed mental health service look like?' Focus groups were held with consumers (n = 10) and carers (n = 10). Thematic analysis of transcripts identified that consumers and carers consider that trauma‐informed care requires increased awareness of trauma amongst mental health staff, opportunities to collaborate in care, active efforts by services to build trust and create safety, the provision of a diversity of models and consistency and continuation of care. The findings provide important new information about the experiences of Australian service users and have implications for the implementation of trauma‐informed care across settings. [ABSTRACT FROM AUTHOR]

Background: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions: Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered. [ABSTRACT FROM AUTHOR]

Background: There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Methods: Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10 years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall‐based questionnaire. Time spent providing care because of the child's disability was obtained using a time‐use diary. Results: The total cost of ID in Australia was estimated to be AUD 72 027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. Conclusions: This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services. [ABSTRACT FROM AUTHOR]

Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers.Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants.Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine.Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. Materials and Methods: This study used semi‐structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. Results: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. Conclusion: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims. [ABSTRACT FROM AUTHOR]

Background: Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life.Methods: We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as "Very Good, Good, Fair, or Poor." Using thematic analysis, we compared staff and relatives' proxy responses.Results: For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment.Conclusions: Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia. [ABSTRACT FROM AUTHOR]

Objective: Carers of people with cancer provide uncompensated care that is often physically, emotionally, and financially demanding, which results in neglect of their own health. This study's objective was to conduct an economic evaluation following a randomised control trial (RCT) involving a proactive telephone outcall intervention aimed at improving health outcomes among carers of cancer patients.Methods: The trial was a single-blind, multicentre, RCT conducted across four Australian health services, comprising three outcalls from trained Cancer Council 131120 (Cancer Council telephone and information support services) nurses compared with three phone call reminders of the availability of 131120 services (control group). Outcalls consisted of telephone contacts to the caregivers initiated by the Cancer Council nurses. The primary trial outcome was reduced carer burden. Health care resource use was measured using a resource use questionnaire (RUQ), and costs were presented in 2013 $(AUS). Quality-adjusted-life-years (QALYs) were also used as health outcomes. An incremental cost-effectiveness ratio (ICER) was calculated, with bootstrapping used to quantify sampling variability. A $50 000 per QALY-gained willingness-to-pay threshold was used. Sensitivity analyses were conducted.Results: Results showed that the total mean QALYs-gained were higher (0.02 QALYs, P = 0.01) in the control group, and total mean costs were lower in the control group ($477, P < 0.001) over the trial duration. The intervention group was dominated by the control group. Results were robust to sensitivity analyses.Conclusions: Results suggest policy makers should not adopt this intervention into routine health care in its current form. Further research into the efficacy and cost-effectiveness of telephone-based interventions for carers is required. [ABSTRACT FROM AUTHOR]

Background: Carer mental health literacy and help seeking are areas that are not well researched in the intellectual disability field. This study aimed to explore the above including service utilization experiences of Australian parents with an offspring with an intellectual disability and a comorbid psychiatric disorder. Method: Forty‐one parents took part in an online survey assessing satisfaction and helpfulness ratings of received services. Twenty‐six parents also completed items to assess mental health literacy and attitudinal barriers to help seeking. Results: Parents showed good mental health literacy with depression and with challenging behaviour associated with autism and poorer literacy with mixed presentations. Few attitudinal barriers to help seeking were reported. Parents reported varied helpfulness and satisfaction ratings with disability and mental health services. Conclusions: Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed. [ABSTRACT FROM AUTHOR]

Objective: To study the level of carer reported distress in mild dementia, over a 3-year period.Methods: This study is part of the Norwegian DemVest-study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed.Results: Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow-up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow-up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3-year period. However, admission to a nursing home during the first year of follow-up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home.Conclusion: Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers. [ABSTRACT FROM AUTHOR]

Background: The quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers.Methods: Approximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains.Results: Hierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01).Conclusions: Attentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self-efficacy in carers may improve carer QoL. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group. Method Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis. Results Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'. Conclusions Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined. [ABSTRACT FROM AUTHOR]

With the envisioned era of internet of things, all aspects of Intelligent Transportation Systems will be connected to improve transport safety, relieve traffic congestion, reduce air pollution, enhance the comfort of transportation and significantly reduce road accidents. In internet of vehicles, regular exchange of current position, direction, velocity and so on, enables mobile vehicles to predict an upcoming accident and alert the human drivers in time or proactively take precautionary actions to avoid the accident. The actualisation of this concept requires the use of channel access protocols that can guarantee reliable and timely broadcast of safety messages. This study investigates the application of network coding concept to increase content of every transmission and achieve improved broadcast reliability with less number of retransmissions. In particular, the authors proposed Code Aided Retransmission‐based Error Recovery (CARER) scheme, introduced a request‐to‐broadcast/clear‐to‐broadcast (RTB/CTB) handshake to overcome hidden node problem and reduce packets collision rate. In order to avoid broadcast storm problem associated with the use of RTB/CTB packet in a broadcast transmission, they developed a rebroadcasting metric used to successfully select a vehicle to rebroadcast the encoded message. The performance of CARER protocol is clearly shown with detailed theoretical analysis and further validated with simulation experiments. [ABSTRACT FROM AUTHOR]

Background/aim Current policy frameworks call for the participation of consumers and carers in all levels of mental health service delivery in Australia. Such inclusion leads to better outcomes for all, however, it is recognised that carers have needs and occupations beyond their carer role. The aim of this article is to describe an innovative carer peer support program developed by a group of occupational therapists. The article describes the rationale, phases of development and the role that occupational therapists played in developing and sustaining the model. This is followed by an exploration of the occupational therapy attitudes, knowledge and skills that contributed to the conceptualisation and implementation of the model. Method Five occupational therapists engaged in a review process involving documentation, literature review, evaluation, reflection and discussion. Four of the occupational therapists had either coordinated or managed the service described. The fifth author facilitated the process. Results Review of the model indicates it equips carers to perform their caring occupation and helps carers recognise the need for occupations beyond caring, for their health and wellbeing. Employing carers as paid workers values their 'real life' experience in their caring occupation. Findings also illustrate that the attitudes, knowledge, skills and competency standards of occupational therapists are well suited in enabling this emerging area of service delivery. Conclusion Although this model has been developed in a clinical mental health setting, the key principles could be applied with carers or consumers across a variety of settings in which occupational therapists are employed. [ABSTRACT FROM AUTHOR]

Objective The aim of this research was to investigate if brain tumour patients underestimate the severity of their impairments and the impact of this behaviour on carer distress . This study also aimed to identify the support services that patients and carers experiencing distress would find most beneficial. Method A total of 32 post-surgery brain tumour patients, their carers, and a control group of 29 patients following surgery to extra-cerebral areas and their carers were recruited from outpatient clinics. Patients and carers rated the patient's psychological well-being and the impact of a range of changes since diagnosis/surgery. Patients and carers also rated their own level of distress and the support services they would find most beneficial. Results When compared with the control group, brain tumour patients were more likely to underestimate their psychological problems ( p < 0.005) and the negative impact of changes to their emotional function ( p < 0.05), interpersonal relationships ( p < 0.05), cognition ( p < 0.05) and coping skills ( p<0.05). A multiple regression analysis showed that underestimation of psychological and interpersonal problems by brain tumour patients explained 35% of the variance in their carer's anxiety. Conclusion The finding of reduced awareness or denial in brain tumour patients and its contribution to increased carer anxiety highlights the need for therapeutic interventions, which improve patient insight/denial and encourage patient and carer communication. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Berk L, Jorm AF, Kelly CM, Dodd S, Berk M. Development of guidelines for caregivers of people with bipolar disorder: a Delphi expert consensus study. Bipolar Disord 2011: 13: 556-570. © 2011 The Authors. Journal compilation © 2011 John Wiley & Sons A/S. Objectives: Close family and friends are often a primary source of support for a person with bipolar disorder. However, there is a lack of information for caregivers about ways to provide helpful support and take care of themselves. Rates of caregiver burden are high and increase the risk of caregiver depression and health problems. This study aimed to develop guidelines to assist caregivers of adults with bipolar disorder to be informed about bipolar disorder and to support the person without neglecting their own wellbeing. Methods: The Delphi method was used to assess consensus between international expert panels of 45 caregivers, 47 consumers, and 51 clinicians about what information to include in the caregiver guidelines. Initial online survey items were based on the existing literature. Subsequent surveys included new or reworded items suggested by panel members and items that needed re-rating. Items endorsed by at least 80% of all three panels formed the content of the guidelines. Results: Nearly 86% of the 626 survey items were endorsed. The items covered information on the illness, treatment, and suggestions on ways caregivers can provide support and take care of themselves in the different phases of illness and wellness, and information on dealing with specific real-life challenges. Although consensus rates were high, meaningful areas of difference between panels were found (e.g., collaboration issues). Conclusions: The guidelines provide comprehensive introductory information, suggestions, and resources for caregivers. Access to relevant information may help caregivers to cope constructively with the person's bipolar disorder and their caregiving situation. The content of the guidelines could be used to help formulate a stepped-care approach to supporting caregivers, ranging from basic information and pamphlets to brief training courses and specialized family or caregiver interventions based on need and accessibility. [ABSTRACT FROM AUTHOR]

Improving the mental health of the people in Wales lies at the heart of the Welsh Assembly Government's public health agenda and the current reforms of the National Health Service in Wales. However, relative to its importance as a health problem, spending on mental health is disproportionately low. Statutory authorities in Wales highlight the importance of listening to, and learning from, service users and carers. This is seen as a way of improving services within the limited funding that is available. The aims of this study were to describe the ways in which mental health service users and carers are currently involved in mental health services across Wales; and to consider the need for an all-Wales mental health service user and carer ‘national mechanism’ to promote genuine partnership. Eight focus groups were held across Wales attended by mental health service users and carers. There is a clear picture of the level and nature of participation, evidence of good practice and user and carer based aspirations for future participation. There is an untapped source of energy and experience that could help transform mental health services for the good of all. To ignore this would be to miss an opportunity to improve the quality of care for all those dependent upon these services, both patients and carers. [ABSTRACT FROM AUTHOR]

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services. [ABSTRACT FROM AUTHOR]

Aim. To explore the existential experiences of 10 patients with chronic obstructive pulmonary disease (COPD) who had been prescribed long-term oxygen therapy (LTOT) and their carers. Background. Chronic obstructive pulmonary disease is a progressive and debilitating condition, with an insidious onset often diagnosed in the middle to later years of life, after a history of worsening breathlessness ( Herbert & Gregor 1997 ). It is a life limiting condition that is on the increase worldwide. Evidence suggests that for some people with COPD oxygen therapy can improve longevity and quality of life ( MRC 1981 , NOTT 1980 ). Understanding of the existential meaning of COPD for people is required. Method. This longitudinal Heideggerian study was carried out between 2005–2006. Participants were interviewed separately, in their own homes, at the start of LTOT, second 3 months later and finally at 9 months. Results. Themes of living with COPD emerged from the data; struggling, fear, experience of ill health, blame, fatalism and hidden disability. Conclusion. The participants all shared very negative experiences regarding the changes that living with COPD had placed on their lifestyle and quality of life. The introduction of oxygen appeared, for all but one couple, to increase the negative impact of living with poor health. Relevance to clinical practice. The participants’ experiences in this study highlight the need for health professionals to explore with people what it is like living with a long-term condition. This sharing of experiences may help individuals to make informed choices about treatment and readdress their perception of ‘just existing’ with ‘no quality to their lives’ thereby enabling people and carers to adjust to living with a life-limiting condition like COPD and the introduction of life long-term therapeutic interventions. [ABSTRACT FROM AUTHOR]

Contemporary standards and policies advocate carer involvement in planning, implementing, and evaluating mental health services. Critics have questioned why such standards and policies fail to move from rhetoric to reality, this particularly being applicable to carer involvement within acute psychiatric settings. As there is only limited UK research on this topic, this interpretive phenomenological study was undertaken to explore the perceived level of involvement from the perspective of carers of service users who were admitted to acute inpatient settings within the previous 2 years. Interviews were conducted with four individuals who cared for a loved one with a mental illness. The interview analysis was influenced by Van Manen, whose interpretive approach seeks to generate a deeper understanding of the phenomenon under study. Four main themes emerged: powerlessness, feeling isolated, needing to be recognized and valued, and a desire for partnership. The findings reflect the views expressed by carers in other studies, identifying that while carers seek to work in partnership with health-care professionals, at a clinical level they often feel excluded. The study concludes by discussing ways of improving and promoting carer involvement and advocating a partnership in care approach within acute psychiatry. [ABSTRACT FROM AUTHOR]

Objectives: To examine the feasibility of a computerised assessment and to compare resulting quality of life scores among oncology carers and patients. Methods: Six hundred and twenty-two subjects (carers n = 234, patients n = 388) attending an oncology or haematology clinic completed the WHO-Quality of Life-BREF (WHOQOL-BREF) and demographics on a personal computer. Age- and gender-standardised scores for carers and patients were compared to community norms. Carers were compared with patients using six three-way ANOVAs. Results: In total, 60.3% (234/388) of the patients had an accompanying carer attempt the survey and 93.6% (219 of 234) completed all items. The four domains of the WHOQOL-BREF had acceptable internal consistency (Cronbach alpha coefficients). Carers had lower quality of life on three domains (physical, psychological and environmental), and patients on two domains (physical and psychological), compared with the general community. Carers had higher overall satisfaction with their health than patients (standardised difference of 0.52 units—moderate effect). Conclusion: A computerised system for assessing quality of life was feasible and found that carers and patients had significant impairments in quality of life. Clinicians and services interested in quality of life for carers and patients may use computerised assessments to identify those with poorer quality of life. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy. Semi-structured interviews took place in the carers' homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services. [ABSTRACT FROM AUTHOR]

Objective: To develop an instrument that can be used to assess the needs of carers of people with an eating disorder and to perform a pilot test of this measure. Method: A focus group was held with 12 carers of people with anorexia nervosa (AN). A self-report questionnaire, the Carers' Needs Assessment Measure (CaNAM), was developed from discussions of the focus group. A pilot test of the CaNAM was carried out with a sample of 28 carers of people with AN. Results: Carers of people with AN showed high levels of unmet needs in the domains of ‘Information about eating disorders’, ‘Support from other people/organizations’ and ‘Information received from general practitioners’. Discussion: Carers of people with AN show high levels of unmet needs. The dominant need was for practical and emotional help in dealing with the eating disorder. A revised version of the CaNAM is currently being tested with a larger sample of carers. Copyright © 2002 John Wiley & Sons, Ltd and Eating Disorders Association. [ABSTRACT FROM AUTHOR]

Documentary evidence suggests that attitudes among local health and social services professionals towards the concept of user involvement in health and social care remain deeply polarized, a position characterized by commentators simultaneously as praise and damnation. Perhaps user involvement in health and social care will enhance, and it appears to resonate with the logic of, participatory democracy, in localities where the centralization of power has posed questions as to the nature and purpose of local governance in public services provision. The problems experienced by Britain’s black and ethnic minorities within the mental health system have been the subject of exhaustive social inquiry. This essay attempts to explore the way in which legal, social, cultural, and political developments interface with mental health care practice in the UK, in order to assist those responsible for mental health services provision to deliver services that are in line with the Government’s expectation of a modernized mental health service that is safe, sound, and supportive. An exploration of these developments within the European, national (UK), and local (Liverpool) contexts is undertaken. An appropriate local response to national priorities will ostensibly cut a swathe through the barriers confronted by the ethnic minority mental health service user in the cross-cultural context, an important prerequisite for the implementation of genuine user involvement. [ABSTRACT FROM AUTHOR]

Objective To assess psychometrically a new questionnaire for measuring the psychosocial morbidity in patients with prostate cancer and in their partners, and to compare the morbidity of patients and their partners. Patients and methods A sequential sample of patients with any stage of prostate cancer and attending general urology outpatient clinics was identified. The questionnaire was administered to 135 patients and their partners in their homes. The Hospital Anxiety and Depression Scale (HADS) questionnaire was also administered to permit construct validation of the new measure. Test-retest reliability was calculated by re-administering the questionnaire to 60 individuals. The hypothetical general cancer distress and social subscales of the questionnaire were also tested for internal consistency. Psychosocial morbidity scores obtained by the patients and partners were compared. Results The questionnaire had good test-retest reliability and construct validity when tested against the HADS. The general cancer distress and social subscales were internally consistent. General cancer distress was highly prevalent and significantly more severe in partners than in patients. There was some degree of general cancer distress in 47% of patients and 76% of partners, whereas severe distress was detected in 11% and 30%, respectively. Social morbidity was limited and of equal severity between the groups. Treatment-related worries and concerns about pain and physical limitation were more common among partners than patients, whereas there was no difference for worries about urinary symptoms. Sexual concerns were the least prevalent and were more of a problem for patients than partners. Conclusion Psychosocial morbidity in prostate cancer is highly prevalent, not only among patients but particularly among their partners. The new questionnaire showed adequate psychometric properties for use in identifying individuals with significant psychosocial morbidity. Applying the questionnaire should permit emotional and informational support to be targeted at the most vulnerable. [ABSTRACT FROM AUTHOR]

Emotional and physical health of spouse caregivers of persons with Alzheimer’s disease and stroke Providing care for a cognitively impaired spouse can adversely affect caregivers’ health. It is not known how early in the caregiver’s ‘career’ emotional and physical health deteriorates. The progressive deterioration associated with Alzheimer’s disease (AD) may have different effects on caregivers’ health when compared with the potential recovery following a stroke. An exploratory study was conducted with 42 couples, equally divided among early phase AD, ischaemic stroke after hospital discharge, and well controls. Couples were evaluated at baseline (time 1), 6 months (time 2) and 1 year (time 3). At time 1, depression was significantly higher in AD and stroke caregivers when compared to controls. Over time, depression increased significantly for AD caregivers with 21% evidencing moderate to severe depression at time 1 and 50% at time 3. For stroke caregivers there was a significant interaction effect with race: white stroke caregivers’ depression increased over time while African American stroke caregivers’ depression decreased. Physical health was not significantly different for the three groups and remained stable over time. Cognitive and functional impairment levels of care recipients were significantly related to stroke caregivers’ but not AD caregivers’ depression. Long-term counselling and support to family caregivers is advocated. [ABSTRACT FROM AUTHOR]

A factor-analysis of caregiving impact appraisals amongst a community-derived sample of informal carers of elderly people revealed two negative (care work strain and relationship dissatisfaction) and two positive (care work satisfaction and care lifestyle satisfaction) scales. Validity was assessed by means of concurrent correlations with levels of assistance with daily living tasks provided by carers and levels of behavior problems exhibited by elderly dependents. Criterion validity was considered in relation to two important career outcomes; willingness to care and an standardized measure of strain. Each of the four scales was significantly associated with concurrently assessed willingness to care. Care work strain and relationship dissatisfaction were associated with concurrently measured strain symptomology. Evidence of 6-month predictive validity was obtained for the care work strain scale. [ABSTRACT FROM AUTHOR]

The study investigated the relationship between social and formal support in promoting the psychological adjustment of spouse caregivers of dementia sufferers. It was found that the quality of social support was negatively correlated with the degree of perceived strain and the level of depression. This result suggests that social support reduces the caregiver's strain or depression. In contrast, formal support was positively correlated with strain, but not with depression, indicating that in the present sample, increased formal support may be reactive to strain in the caregiver. The implications of the findings for the community care of dementia sufferers are discussed. [ABSTRACT FROM AUTHOR]

For many situations involving a mental health crisis, carers (e.g. family or friends) are present and either attempt to help the person overcome the crisis or request assistance from professional services (e.g. mental health or police). Comparatively, little research has explored how carers experience the crisis, the professional response and how the nature of the response, in turn, impacts carers. The current study was conducted to explore these issues during individual interviews with nine carers who had previous contact with police and mental health services during a crisis response. Collected data described the definition and perceived impact of a mental health crisis for carers, how carers had experienced a crisis response from police and mental health services, and how the professional response had impacted on carers. Of importance was the finding that carers were often themselves traumatized by witnessing or being involved in the crisis, however, were rarely offered direct education or support to help them cope or prevent future crises. A number of carers described a reluctance to request assistance from professional services due to previous poor experiences. This highlighted the importance of implementing strategies to deliver more timely, respectful, specialist and collaborative crisis responses to improve carer and consumer outcomes. [ABSTRACT FROM AUTHOR]