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Background: Mental capacity legislation in the UK is designed to safeguard the rights of people who may need support, or may be unable, to make autonomous decisions. Very limited evidence has been published about the impact of the COVID‐19 pandemic on the application of mental capacity legislation and, to our knowledge, none on the ability of speech and language therapists (SLTs) to support people with communication disabilities to engage in decision‐making. Aims: To describe how UK SLTs supported people with communication disabilities to make decisions and participate in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. Methods & Procedures: This descriptive, cross‐sectional study used an online survey to collect quantitative and qualitative data about SLTs' practice experiences between August and November 2020. SLTs working with a range of adult clinical populations in different care settings were sampled purposively from all UK jurisdictions. Participants were recruited through professional networks and social media. Quantitative data were summarized using descriptive statistics. Qualitative data were analysed thematically. Outcomes & Results: Data were collected from 107 SLTs working in a range of settings across all four UK nations. The sample included SLTs working with people with neurological conditions, learning disabilities, mental health conditions and acute confusion. The need for SLT support appeared to increase during the pandemic. Most respondents were still able to offer support; however, the amount and nature of support varied. Quality of support was impacted by adjustments associated with social distancing and infection control restrictions. Personal protective equipment (PPE) was identified as a barrier to communication. Indirect working methods (e.g., telehealth) were inaccessible to some people with communication disabilities. Most respondents felt confident that legal requirements were upheld, but suggested this group was less able to engage in decision‐making and had reduced access to support to manage their own health conditions. Conclusions & Implications: Some SLT services were limited in their ability to meet the decision‐making support needs of people with communication disabilities during the COVID‐19 pandemic due to structural and systemic barriers. This suggests that existing inequities in the provision of care for people with communication disabilities in the UK were amplified during the pandemic. What this paper adds: What is already known on the subject: People with communication disabilities may require support from healthcare professionals, including SLTs, to make decisions and communicate their wishes and preferences about their care, in line with mental capacity legislation. There is a lack of published evidence relating to how changes in staff deployment and resource during the COVID‐19 pandemic may have impacted on the ability of SLTs to provide this support. What this paper adds to existing knowledge: This study provides novel evidence about the ways in which UK SLTs supported people with communication disabilities to engage in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. In some cases, the amount and quality of decision‐making support available was affected negatively due to changes in healthcare delivery and resource management and SLT working practices. What are the potential or actual clinical implications of this work?: This study suggests that some people with communication disabilities experienced greater barriers to receiving professional support to maximize their autonomy and manage their health conditions during the COVID‐19 pandemic. Speech and language therapy services and healthcare commissioners should consider how best to ensure equitable service delivery to this population in resource‐limited situations. [ABSTRACT FROM AUTHOR]

Background Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. Design and methods An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n  = 6), relatives (n  = 4), nursing home staff (n  = 19), and visiting health and social care professionals (n  = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. Findings This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. Conclusion The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for 'as long as possible'. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion. [ABSTRACT FROM AUTHOR]

There are many challenges in providing palliative and end-of-life care to people with dementia; some of which may be reduced through advance care planning (ACP) to support the person with the diagnosis to have a greater influence on their care at end-of-life. Advance care planning has been defined as a process of discussing and recording wishes, values, and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. This paper considers some of the barriers and enablers to lead to better support of ACP in families affected by dementia. [ABSTRACT FROM AUTHOR]

Background: Low socio-economic status can lead to poor patient outcomes, exacerbated by lack of integration between health and social care and there is a demand for developing new models of working. Aim: To improve connections between patients, local services and their communities to reduce unscheduled admissions. Design and setting: A primary care cluster with areas of high deprivation, consisting of 11 general practices serving over 74,000 people. Method: A multi-disciplinary team with representatives from healthcare, local council and the third sector was formed to provide support for people with complex or social needs. A discharge liaison hub contacted patients following hospital discharge offering support, while cluster pharmacists led medicine reviews. Wellbeing Connectors were commissioned to act as a link to local wellbeing and social resources. Advance Care Planning was implemented to support personalised decision making. Results: Unscheduled admissions in the over 75 age group decreased following the changes, equating to over 800 avoided monthly referrals to assessment units for the cluster. Over 2,500 patients have been reviewed by the MDT since its inception with referrals to social prescribing groups, physiotherapy and mental health teams; these patients are 20% less likely to contact their GP after their case is discussed. An improved sense of wellbeing was reported by 80% of patients supported by wellbeing connectors. Staff feel better able to meet patient needs and reported an increased joy in working. Conclusion: Improved integration between health, social care and third sector has led to a reduction in admissions, improved patient wellbeing and has improved job satisfaction amongst staff. [ABSTRACT FROM AUTHOR]

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the ‘good death’: free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the ‘good death’ as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that 'proxy' decisions about research are based on their wishes and preferences. Methods: A cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis. Results: A total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person's general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals' preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken. Conclusions: There were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders. [ABSTRACT FROM AUTHOR]

The article discusses the Mental Healthcare Act of India, enacted in 2017, which addresses mental health and capacity provisions within the country. The authors suggest that due to cultural diversity, certain revisions and amendments are needed in the mental capacity provisions of the act. They compare the Indian Mental Healthcare Act 2017 with similar legislations in the U.K.'s devolved nations, highlighting the challenges and cultural considerations associated with assessing mental capacity.

The use of 'Do Not Attempt Cardiopulmonary Resuscitation' (DNACPR) recommendations has come under scrutiny during the COVID-19 pandemic, and the Care Quality Commission (CQC) has issued a call for new standards, guidance and training. One group for whom new training is required is 'capacity professionals' working in and with residential care facilities. These professionals (including Independent Mental Capacity Advocates and Best Interests Assessors) typically have a social work background and have specialist training regarding the 2005 Mental Capacity Act , the provisions of which have a direct relevance to DNACPR recommendations. We report on a survey and focus groups that probed the experiences of this professional group during the pandemic. We recruited 262 participants by approaching civil society organisations in which capacity professionals are well represented; twenty-two participated in follow-on focus groups. We used manifest content analysis and descriptive statistics to analyse the results. Our findings contribute to an emerging picture of what transpired in residential care homes during the first year of the pandemic and help to provide an empirical and normative basis for the development of the new guidance and training for which the CQC has called. [ABSTRACT FROM AUTHOR]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P  < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P  < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting. [ABSTRACT FROM AUTHOR]

Background: In the UK, district nursing services (DNS) deliver care to people intheir own homes and have regular contact with people with dementia. Research conducted with nurses working in similar roles outside the UK suggests their contribution to high quality dementia care is limited by compassion fatigue, lack of dementia training and low levels of confidence. However, there is a paucity of research exploring the role and learning and support needs of nurses within DNS. Objectives: The aim was to gain insight into the role and experiences of nurses caring for people living with dementia at home. Methods: The study was informed by a descriptive phenomenological approach. Semi‐structured interviews were conducted with a purposive sample of ten nurses working in DNS. Data were analysed thematically. Results: Five main themes were identified: 'Home as a care setting' reflected how delivering home‐based care shaped participants experiences of caring for people with dementia; 'Taking it in their stride' revealed how participants adapted and responded to the complexity of care needs for people with dementia; 'Complexity and unpredictability' related to the unpredictable nature of people with dementia's care needs and the impact this had on participants' workloads; 'Expertise and support within the wider team' detailed which networks nurses used for advice and support to manage the complex needs of people living with dementia at home; 'Specialist support' identified the need for structural changes and resources to enable the nurses to deliver the care needed. Conclusions: This study enables better understanding of the role of DNS in supporting people with dementia to live at home. This is important for defining how dementia care can become effectively integrated into primary care. Recommendations include improved models of care, which factor in specialist nurses, additional time for home visits and greater emphasis on education and training. Implications for practice: Improved models of working that factor in additional time and staffing such as specialist nurses in dementia and palliative care would allow DNS to meet the needs of people with dementia more effectively. [ABSTRACT FROM AUTHOR]

People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end‐of‐life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi‐structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end‐of‐life preparation. Sixteen caregivers participated in face‐to‐face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end‐of‐life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end‐of‐life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day‐to‐day care. Importantly the findings suggest that planning and preparing to provide end‐of‐life for people with dementia should recognise and respect family and cultural contexts and religious beliefs. [ABSTRACT FROM AUTHOR]

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster‐randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post‐ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice. [ABSTRACT FROM AUTHOR]

Most people in high income countries experience dying while receiving healthcare, yet dying has no clear beginning, and contexts influence how dying is conceptualised. This study investigates how UK physicians conceptualise the dying patient. We employed Scoping Study Methodology to obtain medical literature from 2006-2021, and Qualitative Content Analysis to analyse stated and implied meanings of language used, informed by social-materialism. Our findings indicate physicians do not conceive a dichotomous distinction between dying and not dying, but construct conceptions of the dying patient in subjective ways linked to their practice. We argue that the focus of future research should be on exploring practice-based challenges in the workplace to understanding patient dying. Furthermore, pre-Covid-19 literature related dying to chronic illness, but analysis of literature published since the pandemic generated conceptions of dying from acute illness. Researchers should note the ongoing effects of Covid-19 on societal and medical awareness of dying. [ABSTRACT FROM AUTHOR]

Background: Patients still receive non-beneficial treatments when nearing the end of life. Advance care planning (ACP) interventions have shown to positively influence compliance with end of life wishes. Hospital physicians seem to miss opportunities to engage in ACP, whereas patients visiting the outpatient clinic usually have one or more chronic conditions and are at risk for medical emergencies. So far, implemented ACP interventions have had limited impact. Structural implementation of ACP may be beneficial. We hypothesize that having ACP conversations more towards the end of life and involving the treating physician in the ACP conversation may help patient wishes and goals to become more concrete and more often documented, thus facilitating goal-concordant care. Aim: To facilitate timely shared decision making and increase patient autonomy we aim to develop an ACP intervention at the outpatient clinic for frail patients and determine the feasibility of the intervention. Methods: The United Kingdom's Medical Research Council framework was used to structure the development of the ACP intervention. Key elements of the ACP intervention were determined by reviewing existing literature and an iterative process with stakeholders. The feasibility of the developed intervention was evaluated by a feasibility study of 20 ACP conversations at the geriatrics and pulmonology department of a non-academic hospital. Feasibility was assessed by analysing evaluation forms by patients, nurses and physicians and by evaluating with stakeholders. A general inductive approach was used for analysing comments. The developed intervention was described using the template for intervention description and replication (TIDieR). Results: We developed a multidisciplinary timely undertaken ACP intervention at the outpatient clinic. Key components of the developed intervention consist of 1) timely patient selection 2) preparation of patient and healthcare professional 3) a scripted ACP conversation in a multidisciplinary setting and 4) documentation. 94.7% of the patients, 60.0% of the nurses and 68.8% of the physicians agreed that the benefits of the ACP conversation outweighed the potential burdens. Conclusion: This study showed that the developed ACP intervention is feasible and considered valuable by patients and healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. Method: Underpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified. Results: Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. Conclusion: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation. [ABSTRACT FROM AUTHOR]

Introduction advance care planning (ACP) in care homes has high acceptance, increases the proportion of residents dying in place and reduces hospital admissions in research. We investigated whether ACP had similar outcomes when introduced during real-world service implementation. Methods a service undertaking ACP in Lincoln, UK care homes was evaluated using routine data. Outcomes were proportion of care homes and residents participating in ACP; characteristics of residents choosing/declining ACP and place of death for those with/without ACP. Hospital admissions were analysed using mixed-effects Poisson regression for number of admissions, and a mixed-effects negative binomial model for number of occupied hospital bed days. Results About 15/24 (63%) eligible homes supported the service, in which 404/508 (79.5%) participants chose ACP. Residents choosing ACP were older, frailer, more cognitively impaired and malnourished; 384/404 (95%) residents choosing ACP recorded their care home as their preferred place of death: 380/404 (94%) declined cardiopulmonary resuscitation. Among deceased residents, 219/248 (88%) and 33/49 (67%) with and without advance care plan respectively died in their care home (relative risk 1.35, 95% confidence interval [CI] 1.1–1.6, P  < 0.001). Hospital admission rates and bed occupancy did not differ after implementation. Discussion About 79.5% participants chose ACP. Those doing so were more likely to die at home. Many homes were unwilling or unable to support the service. Hospital admissions were not reduced. Further research should consider how to enlist the support of all homes and to explore why hospital admissions were not reduced. [ABSTRACT FROM AUTHOR]