Chatting: Family Carers' Perspectives on Receiving Support from Dementia Crisis Teams.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them.

Inclusion of adults with conditions that have the potential to affect capacity and or communication in research: triangulation from a mixed-methods study of current practice and values across multiple stakeholders.

OBJECTIVES: We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005. DESIGN: The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings. SETTING: England and Wales. PARTICIPANTS: There were 61 participants who took part in semistructured interviews, of which 39 were adults with conditions with potential to affect capacity and/or communication, 6 were in support roles for adults with conditions with potential to affect capacity and/or communication (including family members and professionals in advocacy organisations), 8 were members of research ethics committees flagged under the Mental Capacity Act to review research where there could be issues of mental capacity and 8 were researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. The online survey had 128 participants, researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. RESULTS: All stakeholders were supportive of the genuine inclusion of adults with conditions that have the potential to affect capacity and/or communication in research, and exclusion was seen as a form of discrimination. Many researchers were daunted by meeting the threshold within the legislation for including participants who may lack capacity. CONCLUSION: Further training, expertise and resources are required to promote the successful inclusion in research of adults with conditions that have the potential to affect capacity and/or communication.

Practitioners' Views on Enabling People With Dementia to Remain in Their Homes During and After Crisis.

One way of supporting people living with dementia is assisting them to live in their homes (as opposed to being admitted to hospital or other facility) and providing them with a specialist service that responds to crises. This makes it important to understand how best to organize such crisis response services. This study examines practitioners' actions to reduce inpatient admissions among this population. Through interviews with healthcare practitioners, we find that practitioners negotiate a complex intersection between (1) what constitutes a crisis in relation to the patient and/or the carer, (2) the demands of building a working relationship with both the patient and their family carers, and (3) ensuring effective communications with social services responsible for long-term community support. Findings suggest that policies aimed at reducing admissions should be based on a model of care that more closely maps practitioners' relational and bio-medical work in these services.

A Qualitative Study of Understanding Reasons for Self-Harm in Adolescent Girls.

Objective: Self-harm is an important public health issue in the UK. Young people who self-harm frequently feel misunderstood, and unable to access help. Improving understanding is key to informing the development and delivery of effective treatments and services. Methods: In this qualitative study, we interviewed nine adolescent girls (13-17 years old) with recurrent self-harm, recruited from NHS specialist child and adolescent mental health services. Data were analysed using Interpretative Phenomenological Analysis (IPA). Results: Findings revealed that self-harm is experienced as powerful mental and physical urges, sated only by self-harming, suggesting that self-harm could be considered a compulsive rather than impulsive disorder, representing a new perspective on the behaviour. Five themes emerged: emotion regulation; an addictive urge; self-harm to survive; interpersonal triggers; interpersonal relationships, not mechanical distractors, reduce self-harm. Conclusions: This study provides further evidence that non-suicidal self-injury may be engaged in to reduce suicidal risk. Seeking the company of helpful friends or family members may reduce the urge to self-harm. Repetitive self-harm may be a compulsive behaviour.

The psychological impact of pulmonary embolism: A mixed-methods study.

BACKGROUND: Patients diagnosed with pulmonary embolism (PE) are reported to experience symptoms of posttraumatic stress disorder (PTSD) and existential anxiety following their diagnosis. They may also experience negative changes in perspective and hypervigilance of PE symptoms. OBJECTIVE: The aim of this study was to document the mental and emotional experience associated with PE diagnosis through the lens of PTSD, to better understand the factors involved in psychological distress following receipt of a PE diagnosis. PATIENTS/METHODS: This was a mixed-methods study in two parts: (i) measurement of self-reported PTSD symptoms among patients attending thrombosis clinic and (ii) semistructured interviews with patients about their experience of receiving a diagnosis of PE and its psychological aftermath. RESULTS: Of 72 patients who participated in the survey, two met the criteria for a tentative diagnosis of PTSD. The semistructured interviews with 37 patients suggested that around half of respondents experienced some degree of ongoing psychological distress. Those with psychological distress often recalled painful symptoms, recalled diagnosis delivery as stressful, worried about PE recurrence, and had anxieties about stopping their anticoagulant medication. Few patients reported inclination to seek support from professional mental health services. CONCLUSIONS: We found ongoing and untreated psychological distress among people who were previously diagnosed with PE.

Mealtime support for adults with intellectual disabilities: Understanding an everyday activity.

BACKGROUND: Mealtime support has a direct bearing on the diet-related health of men and women with intellectual disabilities as well as opportunities for expressing dietary preferences. METHOD: Semi-structured interviews with a sample of direct support staff providing mealtime support to adults with intellectual disabilities. RESULTS: When managing tensions between a person's dietary preferences and ensuring safe and adequate nutrition and hydration, direct support staff are sensitive to a wide range of factors. These include the following: clinical advice; service users' rights to choose; their (in)capacity to weigh up risks; how service users communicate; the constituents of a healthy diet; and a duty to protect service users' health. CONCLUSIONS: Those responsible for setting standards and regulating the care practices need to look beyond too simple ideas of choice and safety to recognize ways in which providing support at mealtimes is a complex activity with serious consequences for people's health and well-being.

Conceptualizing Dementia Crisis and Preferences for Resolution: A Public Perspective.

Background: Crisis intervention services for people with dementia in the United Kingdom are poorly defined with no standardized model of working. This may be due to the lack of a clear conceptualization of dementia crisis, resulting in variation in national service delivery. Methods: This study employed a novel public engagement questionnaire data collection technique with 57 participants to gain an updated perspective on the concept of health-related crisis from the point of view of the public. Results: Analysis revealed crisis as a transformational moment that may arrive unexpectedly but could also be the culmination of a sequence of events. Crisis resolution requires external and expert help, and associated feelings of panic and despair can engender the task of resolution by oneself insurmountable. Conclusions: Participants had clear expectations of crisis intervention services, with initial practical and emotional support to reduce risks, and a person-centered approach with family involvement.

"Reasonable adjustments" under the UK's Equality Act 2010: An enquiry into the care and treatment to patients with intellectual disabilities in acute hospital settings.

OBJECTIVES: To understand the views of qualified medical practitioners regarding "reasonable adjustments" and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients. METHODS: Semi-structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data. RESULTS: All 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non-conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of "reasonable adjustments" introduced to improve the quality of the care received by this group of patients. CONCLUSIONS: Medical practitioners should make better use of the "reasonable adjustments" introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women.

Training nurses in a competency framework to support adults with epilepsy and intellectual disability: the EpAID cluster RCT.

BACKGROUND: People with an intellectual (learning) disability (ID) and epilepsy have an increased seizure frequency, higher frequencies of multiple antiepileptic drug (AED) use and side effects, higher treatment costs, higher mortality rates and more behavioural problems than the rest of the population with epilepsy. The introduction of nurse-led care may lead to improvements in outcome for those with an ID and epilepsy; however, this has not been tested in a definitive clinical trial. OBJECTIVE: To determine whether or not ID nurses, using a competency framework developed to optimise nurse management of epilepsy in people with an ID, can cost-effectively improve clinical and quality-of-life outcomes in the management of epilepsy compared with treatment as usual. DESIGN: Cluster-randomised two-arm trial. SETTING: Community-based secondary care delivered by members of community ID teams. PARTICIPANTS: Participants were adults aged 18-65 years with an ID and epilepsy under the care of a community ID team and had had at least one seizure in the 6 months before the trial. INTERVENTIONS: The experimental intervention was the Learning Disability Epilepsy Specialist Nurse Competency Framework. This provides guidelines describing a structure and goals to support the delivery of epilepsy care and management by ID-trained nurses. MAIN OUTCOME MEASURES: The primary outcome was the seizure severity scale from the Epilepsy and Learning Disabilities Quality of Life questionnaire. Measures of mood, behaviour, AED side effects and carer strain were also collected. A cost-utility analysis was undertaken along with a qualitative examination of carers' views of participants' epilepsy management. RESULTS: In total, 312 individuals were recruited into the study from 17 research clusters. Using an intention-to-treat analysis controlling for baseline individual-level and cluster-level variables there was no significant difference in seizure severity score between the two arms. Altogether, 238 complete cases were included in the non-imputed primary analysis. Analyses of the secondary outcomes revealed no significant differences between arms. A planned subgroup analysis identified a significant interaction between treatment arm and level of ID. There was a suggestion in those with mild to moderate ID that the competency framework may be associated with a small reduction in concerns over seizure severity (standard error 2.005, 95% confidence interval -0.554 to 7.307; p = 0.092). However, neither subgroup showed a significant intervention effect individually. Family members' perceptions of nurses' management depended on the professional status of the nurses, regardless of trial arm. Economic analysis suggested that the competency framework intervention was likely to be cost-effective, primarily because of a reduction in the costs of supporting participants compared with treatment as usual. LIMITATIONS: The intervention could not be delivered blinded. Treatment as usual varied widely between the research sites. CONCLUSIONS: Overall, for adults with an ID and epilepsy, the framework conferred no clinical benefit compared with usual treatment. The economic analysis suggested that there may be a role for the framework in enhancing the cost-effectiveness of support for people with epilepsy and an ID. Future research could explore the specific value of the competency framework for those with a mild to moderate ID and the potential for greater long-term benefits arising from the continuing professional development element of the framework. TRIAL REGISTRATION: Current Controlled Trials ISRCTN96895428. FUNDING: This trial was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 10. See the NIHR Journals Library website for further project information.

Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents.

BACKGROUND: Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. METHOD: This possibility is tested through interviews with samples of (i) professional 'opinion former' with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent-members of these same organisations. RESULTS: The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. CONCLUSION: While a more medicalised approach to this populations' disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.

Clinical services for adults with an intellectual disability and epilepsy: A comparison of management alternatives.

BACKGROUND: Intellectual disability (ID) is relatively common in people with epilepsy, with prevalence estimated to be around 25%. Surprisingly, given this relatively high frequency, along with higher rates of refractory epilepsy than in those without ID, little is known about outcomes of different management approaches/clinical services treating epilepsy in adults with ID-we investigate this area. MATERIALS & METHODS: We undertook a naturalistic observational cohort study measuring outcomes in n = 91 adults with ID over a 7-month period (recruited within the period March 2008 to April 2010). Participants were receiving treatment for refractory epilepsy (primarily) in one of two clinical service settings: community ID teams (CIDTs) or hospital Neurology services. RESULTS: The pattern of comorbidities appeared important in predicting clinical service, with Neurologists managing the epilepsy of relatively more of those with neurological comorbidities whilst CIDTs managed the epilepsy of relatively more of those with psychiatric comorbidities. Epilepsy-related outcomes, as measured by the Glasgow Epilepsy Outcome Scale 35 (GEOS-35) and the Epilepsy and Learning Disabilities Quality of Life Scale (ELDQoL) did not differ significantly between Neurology services and CIDTs. DISCUSSION: In the context of this study, the absence of evidence for differences in epilepsy-related outcomes amongst adults with ID and refractory epilepsy between mainstream neurology and specialist ID clinical services is considered. Determining the selection of the service managing the epilepsy of adults with an ID on the basis of the skill sets also required to treat associated comorbidities may hence be a reasonable heuristic.

Improving outcomes in adults with epilepsy and intellectual disability (EpAID) using a nurse-led intervention: study protocol for a cluster randomised controlled trial.

BACKGROUND: In adults with intellectual disability (ID) and epilepsy there are suggestions that improvements in management may follow introduction of epilepsy nurse-led care. However, this has not been tested in a definitive clinical trial and results cannot be generalised from general population studies as epilepsy tends to be more severe and to involve additional clinical comorbidities in adults with ID. This trial investigates whether nurses with expertise in epilepsy and ID, working proactively to a clinically defined role, can improve clinical and quality of life outcomes in the management of epilepsy within this population, compared to treatment as usual. The trial also aims to establish whether any perceived benefits represent good value for money. METHODS/DESIGN: The EpAID clinical trial is a two-arm cluster randomised controlled trial of nurse-led epilepsy management versus treatment as usual. This trial aims to obtain follow-up data from 320 participants with ID and drug-resistant epilepsy. Participants are randomly assigned either to a 'treatment as usual' control or a 'defined epilepsy nurse role' active arm, according to the cluster site at which they are treated. The active intervention utilises the recently developed Learning Disability Epilepsy Specialist Nurse Competency Framework for adults with ID. Participants undergo 4 weeks of baseline data collection, followed by a minimum of 20 weeks intervention (novel treatment or treatment as usual), followed by 4 weeks of follow-up data collection. The primary outcome is seizure severity, including associated injuries and the level of distress manifest by the patient in the preceding 4 weeks. Secondary outcomes include cost-utility analysis, carer strain, seizure frequency and side effects. Descriptive measures include demographic and clinical descriptors of participants and clinical services in which they receive their epilepsy management. Qualitative study of clinical interactions and semi-structured interviews with clinicians and participants' carers are also undertaken. DISCUSSION: The EpAID clinical trial is the first cluster randomised controlled trial to test possible benefits of a nurse-led intervention in adults with epilepsy and ID. This research will have important implications for ID and epilepsy services. The challenges of undertaking such a trial in this population, and the approaches to meeting these are discussed. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: ISRCTN96895428 version 1.1. Registered on 26 March 2013.

Tensions between policy and practice: A qualitative analysis of decisions regarding compulsory admission to psychiatric hospital.

The use of detention for psychiatric treatment is widespread and sometimes necessary. International human rights law requires a legal framework to safeguard the rights to liberty and personal integrity by preventing arbitrary detention. However, research suggests that extra-legal factors may influence decisions to detain. This article presents observational and interview data to describe how decisions to detain are made in practice in one jurisdiction (England and Wales) where a tension between policy and practice has been described. The analysis shows that practitioners mould the law into 'practical criteria' that appear to form a set of operational criteria for identifying cases to which the principle of soft paternalism may be applied. Most practitioners also appear willing, albeit often reluctantly, to depart from their usual reliance on the principle of soft paternalism and authorise detention of people with the capacity to refuse treatment, in order to prevent serious harm. We propose a potential resolution for the tension between policy and practice: two separate legal frameworks to authorise detention, one with a suitable test of capacity, used to enact soft paternalism, and the other to provide legal justification for detention for psychiatric treatment of the small number of people who retain decision-making capacity but nonetheless choose to place others at risk by refusing treatment. This separation of detention powers into two systems, according to the principle that justifies the use of detention would be intellectually coherent, consistent with human rights instruments and, being consistent with the apparent moral sentiments of practitioners, less prone to idiosyncratic interpretations in practice.

Factors influencing the costs of epilepsy in adults with an intellectual disability.

PURPOSE: Despite the common occurrence of intellectual disability (ID) in people with epilepsy, most studies of the cost of epilepsy have focussed primarily or exclusively on people without ID. This paper estimates the costs of supporting people with epilepsy and ID. METHODS: Prospective resource use and outcome data were collected on 91 participants from the east of England for seven months. Multivariate analysis was used to investigate the relationship between costs and patient and healthcare provider characteristics. RESULTS: Mean health care costs relating to epilepsy or ID were £2800 (3500 Euros, 5200 USD) p.a. Modelling suggests costs are lower for patients with more severe ID (p=0.014); and higher for patients managed by a consultant neurologist (p=0.037). DISCUSSION: Our findings support limited evidence from the literature of increased epilepsy costs in people with ID. Patterns of expenditure suggest clinical variation in the treatment of epilepsy according to the severity of ID, particularly in the absence of management by a consultant neurologist.

Decision-making difficulties experienced by adults with autism spectrum conditions.

Autobiographical and clinical accounts, as well as a limited neuropsychological research literature, suggest that, in some situations, men and women with autism spectrum conditions (ASCs) may have difficulty making decisions. Little is known, however, about how people with ASCs experience decision-making or how they might best be supported to make decisions for themselves. In this study, we compared the decision-making experiences of adults with and without ASCs (n=38 and n=40, respectively) using a novel questionnaire and the General Decision Making Style inventory (GDMS, Scott & Bruce, 1995). The participants with ASCs reported experiencing several problems in decision-making more frequently than the comparison group, and were more likely to report avoidance of decision-making, as measured using the GDMS. The findings highlight areas of potential future research and inform suggestions for supporting adults with ASCs during decision-making.

Respecting patient autonomy: understanding the impact on NHS hospital in-patients of legislation and guidance relating to patient capacity and consent.

OBJECTIVES: to determine the extent and nature of the decisions individuals are asked to make as in-patients, and whether doctors, nurses, other health care practitioners, and housekeepers engaged in routine (non-emergency) medical assessments, investigations and treatments, or acts of personal care observe the Reference Guide to Consent for Examination or Treatment, the principles of the Mental Capacity Act (England and Wales) 2005, and the guidance from the Dignity in Care Campaign. METHODS: hospital staff working on a general medical ward and a ward for older people in a large teaching hospital in England were observed for over 50 hours carrying out acts of medical and personal care. The observations were recorded using a semi-structured record sheet, complemented by unstructured field notes. Observations were subsequently categorized, coded and counted. RESULTS: a total of 206 acts were observed, 127 (62%) of which were acts of medical care and 79 (38%) were acts of personal care. Patients approached for acts of personal care were generally presented with choices and options (78%). In contrast, when approached for acts of medical care, they were rarely presented with a choice (6%); instead, health care practitioners either requested permission to perform a procedure (29%) or informed patients that they were about to perform a procedure (50%). Irrespective of the way in which health care practitioners approached patients about acts of medical care, in the overwhelming majority of instances, patients complied (80%, 99 cases), either by giving permission for the act to be performed, or by complying and/or cooperating with the health care practitioner. In only a minority of cases did patients either refuse or resist a proposed procedure (9%). CONCLUSIONS: patients were asked to make many varied decisions and the approaches taken by hospital staff differed depending on the nature of the decision and/or act in question. In contrast to personal care decisions, when health care practitioners approached patients in order to undertake routine acts of medical care, they generally did so in a manner that did not acknowledge that the patient had a right to exercise a choice. This is contrary to current law, policy and guidance. It seems to be rooted in the practical demands of running a hospital ward and uncertainties as to the purpose of securing patient consent before undertaking routine acts of medical care.

The clinical assessment of patients admitted to hospital following an episode of self-harm: a qualitative study.

Based upon qualitative interviews with clinicians responsible for assessing patients admitted to hospital following an episode of self-harm by overdose, this paper documents interactional factors that shape both how clinicians conduct these assessments and their understanding of what 'causes' someone to harm themselves. The analysis first documents how the patients' overdoses are framed as essentially impulsive acts committed in response to adverse circumstances. This is achieved by clinicians' avoidance of any engagement with, or assessment of, a patient's reasons for taking an overdose. Secondly, the analysis considers why the patients' reasons for taking an overdose do not feature in the clinicians' assessments, and shows, by an examination of two deviant cases, that clinicians avoid engaging with patients' motivations so as to: minimise the risk of generating bedside disagreements; avoid the possibility of being drawn into the emotional life of a patient, and shield themselves from the social and economic inequalities that are a feature of many patients' lives. The paper concludes with a discussion of how bedside assessments that do not engage with patients' reasons for taking an overdose might be experienced by the patients themselves and the deleterious effect this could have upon their clinical management.

Hospital clinicians' attitudes towards a statutory advocacy service for patients lacking mental capacity: implications for implementation.

OBJECTIVES: To examine attitudes to the Mental Capacity Act's new statutory Independent Mental Capacity Advocate (IMCA) service in England and Wales and consider the implications for its delivery. METHODS: Quantitative data describing all referrals to the seven pilot IMCA services (January 2006-March 2007) and qualitative data from semi-structured interviews with 18 doctors, 21 senior nurses and one discharge planning manager in four general hospitals in England. RESULTS: Of 127 hospital-based referrals to the seven pilot IMCA services, 29 (23%) were for patients facing serious medical treatments, 52% of whom were judged to lack decision-making capacity due to a learning disability; ninety-eight (77%) were for patients facing a change of accommodation upon hospital discharge, 62% of whom were elderly and lacked capacity due to dementia. While aware of the potential benefits of the IMCA service, clinicians were generally negative about the contribution advocates could make to patients' medical care and thought they could only contribute usefully in a minority of ethically complicated decisions. In contrast, they were more positive about the involvement of advocates in hospital discharge decisions and hoped that they would improve current discharge practice. CONCLUSIONS: Clinicians held ambivalent attitudes towards the involvement of a statutory IMCA service in medical decisions, reflecting beliefs that the service was largely impractical and unnecessary given current procedures for making medical decisions in patients' 'best interests'. Conversely, clinicians were more likely to support advocacy in discharge decisions because they believed that non-medically qualified advocates could make a valuable contribution to decisions that were seen as predominantly social and where practice was frequently considered deficient. By holding these beliefs, clinicians are failing to have due regard for the IMCA service as a statutory measure for safeguarding patients' interests.

Learning disability and the limits of liberal citizenship: interactional impediments to political empowerment.

Recent policy initiatives have moved decisively toward empowering learning disabled citizens, recognising ability over disability, and promoting people's political empowerment and voice in the design of public services. While laudable and encouraging, these initiatives raise an important question: to what extent can a group of service users, whose very entitlement to state-sponsored assistance is justified by putative intellectual impairment, be empowered according to an exclusively liberal model of citizenship that presumes and requires, as its very defining features, intellectual ability and independence? In this paper we consider this question by means of an ethnographic analysis of an innovative advocacy group: the Parliament for People with Learning Disabilities (PPLD). We first document both an institutional and an interactional preference for clients to speak actively for themselves. We then describe three types of interactional trouble that emerged in the PPLD as obstacles to realising this preference in practice and the strikingly similar remedies that were generated to overcome these troubles. We conclude by discussing the limits of an approach to empowering learning disabled individuals that is cast too exclusively in terms drawn from liberal models of citizenship that prioritise voice over care, security, and wellbeing.