Applying Accessibility Theory by Implementing Gradual, Sustainable Change in Daily Practice.

Invisible Moral Wounds of the COVID-19 Pandemic: Are We Experiencing Moral Injury?

Increasing life expectancy is resulting in a growing demand for long-term care; however, there is a shortage of qualified health care professionals (HCPs) to deliver it. If used optimally, technology can provide a solution to this challenge. HCPs play an important role in the use of technology in long-term care. However, technology influences several core aspects of the work that HCPs do, and it is therefore important to have a good understanding of their viewpoint regarding the use of technology in daily practice of long-term care. The aim of this study was to identify the factors that HCPs consider as relevant for using technology in daily practice of long-term care. In this qualitative study, 11 focus groups were organized with 73 HCPs. The focus group discussions were guided by an innovative game, which was specifically developed for this study. The content of the game was categorized into 4 categories: health care technology and me; health care technology, the patient, and me; health care technology, the organization, and me; and facilitating conditions. The perspectives of HCPs about working with technology were discussed based on this game. The focus groups were recorded and transcribed, followed by an inductive thematic analysis using ATLAS.ti 9x (ATLAS.ti Scientific Software Development GmbH). Overall, 2 main domain summaries were developed from the data: technology should improve the quality of care and acceptance and use of technology in care. The first factor indicates the need for tailored and personalized care and balance between human contact and technology. The second factor addresses several aspects regarding working with technology such as trusting technology, learning to work with technology, and collaboration with colleagues. HCPs are motivated to use technology in daily practice of long-term care when it adds value to the quality of care and there is sufficient trust, expertise, and collaboration with colleagues. Their perspectives need to be considered as they play a crucial part in the successful use of technology, transcending their role as an actor in implementation. On the basis of the findings from this study, we recommend focusing on developing technology for situations where both efficiency and quality of care can be improved; redefining the roles of HCPs and the impact of technology hereon; involving HCPs in the design process of technology to enable them to link it to their daily practice; and creating ambassadors in care teams who are enthusiastic about working with technology and can support and train their colleagues.

Sam, a middle-aged Black cisgender male (they/them), was admitted for an organ transplant during the first wave of the COVID-19 pandemic. At that time, visitation was heavily restricted: only compassionate exceptions were allowed for patients at the end of life, those whose care required life-altering decisions, or patients with disabilities who required additional assistance. Organ transplant recipients were considered particularly vulnerable because of immunosuppression. Virtual technologies such as smartphones and tablets were used for patients to communicate with their families, but Sam would often decline calls from their spouse, Alex. Several months went by and Sam was still in our care; they had complications of infections and ultimately experienced multisystem organ failure. After the transplant graft failed, it was decided that Sam would be moved to a unit that allowed one designated visitor. When nurses asked Alex whether they would be able to visit, Alex became defensive and began to communicate in a way that some nurses felt was threatening. Alex explained that they needed to continue to work and could not make the long journey to the hospital multiple times each week. Sam continued to deteriorate and on their final day, Alex and Sam's lifelong friend both came to the bedside. A music therapist and spiritual caregiver provided final services, and the intensive care unit (ICU) nurses experienced the death of another patient for whom they had cared for many months and who had spent their final months isolated from friends and family.Critical care nurses face complex ethical decisions on a daily basis, and these decisions have been magnified by the SARS-CoV-2/COVID-19 pandemic. Ethical considerations are apparent when nurses are involved in life-altering decisions such as withholding or withdrawing life-sustaining treatments, organ transplantation, and surgical candidacy. By contrast, "microethics" captures the ethics of everyday clinical practice and emphasizes the ethical impact of day-to-day interactions and relational considerations.1 Adopting this "view from the inside," here we focus specifically on new virtual visitation practices and their impact on patients, their loved ones, and nursing care.1 Cuchetti and Grace2 previously argued that nurses should adopt a critical stance and use "intentional authenticity" when using technology to maintain the patient-nurse relationship. Intentional authenticity requires that nurses make authentic and intentional choices regarding the use of technology in specific situations, understanding its potential positive and negative effects on patient care.2 In this article we consider how COVID-19 has brought many microethical issues to the forefront and adopt a critical stance through which to explore the ethical trade-offs nurses face when they choose to use technology for virtual visitation. Using Sam's case as a basis, we consider the ethical complexities and repercussions of virtual visitation, in particular the way in which technology has both connected loved ones and exacerbated social inequalities throughout the pandemic. At the forefront of the discussion are considerations of equity, safety, trust, and nursing obligations to maintain relationships with and between patients and their loved ones.3The COVID-19 pandemic has required critical care nurses to quickly change many of their practices in order to protect communities within and beyond hospital walls. In many places, visitation was almost entirely restricted, including for patients who were confirmed or likely to have contracted COVID-19.4-6 Nurses and health care systems shifted to offering virtual visitation using smartphones or tablets. The absence of visitors created logistical and ethical challenges for nurses and patients in building and maintaining relationships with loved ones, and, we argue, it also impacted decision-making.Nurses have grown accustomed to frequent changes in practice as technology has advanced, and the recent nursing literature contains discussions about the long-term impact of these changes on nursing care and the healing environment. Treatment modalities such as extracorporeal membrane oxygenation, left ventricular assist devices, and total artificial hearts have created new liminal spaces between life and death.7 Nurses practicing in critical care settings have long been warned about the risks of becoming too distracted by the complex life-sustaining machines such that they risk overlooking the relational needs of the patient. New informational technology used for interfacing with patients creates additional barriers between nurses and patients. Electronic documentation requires nurses to spend hours staring at computer screens in order to chart and receive reminders for upcoming interventions. Exploring the use of smartphones, computers, tablets, and the internet, Cuchetti and Grace2 described how these technologies have the potential to dehumanize patients. Throughout the pandemic, however, we have seen how these technologies have brought people together; rather than serving as a barrier, they have acted as a bridge between patients and loved ones and have enabled health care workers to understand their patients in the absence of in-person visitation.Family presence in the critical care setting is considered an essential component of care and a key element of ICU liberation bundles.8 Provision 1 of the American Nurses Association Code of Ethics for Nurses states that nursing support extends beyond the patient to also include the family.9 For the purposes of this article, we use the term family broadly to include relatives, friends, and other individuals whom the patient considers support persons. For patients, visitation has psychosocial benefits such as reduced anxiety, confusion, and agitation, and physiological benefits including fewer cardiovascular complications and shorter length of ICU stay.10 For loved ones, visitation increases satisfaction, decreases anxiety, promotes understanding of patient care and preferences, and allows more opportunities for education.10 Despite the known benefits of visitation, in order to maintain safety for patients, health care workers, and the broader community and to reduce the spread of SARS-CoV-2, visitation has been heavily restricted.11,12 Such restriction can also be interpreted as supported by the American Nurses Association Code of Ethics: provision 3 states that nurses have an obligation to protect the rights, health, and safety of patients, and provision 5 stipulates that nurses owe the same duties to themselves and others.9In Sam's case, because of their immunocompromised state, they were completely restricted from seeing their spouse in person for months. Sam, like many other patients, lost the important role their family might have taken to assist with eating and grooming and to provide companionship. The lack of family presence impacts the healing environment that we try to create for patients.13 In an attempt to connect patients and families, many health care organizations used tablets to facilitate visual connections. Considering digital health technologies and relational geography, Peter14 states that "geographers recognize how spaces are created through social interactions and are viewed to be ever-changing, creating 'social space.'"(p138) By removing visitors from health care settings and instead using virtual technologies, we change the social space of the healing environment.For patients who are able to participate in virtual visitation, the use of technology created ways for them to stay connected to family and friends from the comfort of their hospital room while maintaining safety. Whereas many ICUs previously may have discouraged use of smartphones, they now promoted digital connection to reduce patients' social isolation. In Sam's case, despite restricted in-person visitation, they frequently asked the nurse to decline virtual visitation and phone calls, stating that they did not feel up to communicating. Many members of the nursing team felt uncomfortable informing Alex of this, but they also recognized that Sam understood their choice, and so declining virtual visitation promoted Sam's autonomy. Although connection to family may be important to some patients, nurses need to recognize that not all patients may feel comfortable with virtual visitation.13 Nurses have an ethical obligation to support a patient's right to self-determination,9 which may include maintaining the patient's privacy rather than using virtual technology, even if this choice upsets family members.The shift of ethical obligations and priorities during the pandemic has contributed to moral distress. We understand moral distress as psychological distress one experiences in response to a morally challenging event. Morley et al15 describe 5 subtypes of moral distress (see the Table). We have encountered many nurses who have expressed moral-constraint distress when required to facilitate virtual visitation. Whereas many nurses believe that it is their responsibility to connect patients and loved ones, they also have expressed frustration and anger because they have so many competing responsibilities to other acutely ill patients. Nurses continue to struggle with high acuity and understaffing due to colleagues contracting COVID-19 or leaving the profession. The nurses who remain have found themselves responsible for facilitating updates to families through phones or tablets, which is time-consuming. On COVID-19 units, many nurses expressed feeling that the expectation that they would spend more time in patient rooms to facilitate virtual visitation and perform tasks typically performed by persons in other roles, such as emptying trash, was unfair and potentially increased their risk of COVID-19 exposure while consulting services safely worked remotely. This perspective may be countered by arguing that virtual visitation still reduces one's risk of exposure to COVID-19 when compared with in-person visitation, but nonetheless, many nurses have expressed feeling that they have shouldered a disproportionate burden of responsibility during the pandemic.3In facilities that previously offered 24-hour visitation, families may request continuous video feeds to replace in-person visitation. This request may not seem unreasonable given the lack of access to their loved ones, but it does create ethical questions about both patient and staff privacy and fair allocation of resources, given that most units are not likely to have access to multiple continuous video feeds. We might decide to add video feeds only for the most critical patients so that loved ones can feel more connected, or for patients who might be considered to be particularly vulnerable. Many interventions provided in the ICU, however, can be temporarily painful, and though nurses provide these interventions with the long-term goal of helping the patient to recover or heal, this aim may not be readily apparent to family members watching the video feed. Repositioning and tracheal suctioning may hurt temporarily, but without these interventions the patient may experience complications due to skin breakdown or be unable to breathe. Families can be educated virtually about the clinical indications and risk-benefit trade-offs for an intervention, but the context of care can be lost in a continuous feed. A family might miss a nurse's comforting touch, reassurance, and coaching through a painful intervention. Nurses may experience moral-uncertainty distress in wanting the family to feel connected but being unsure about whether an incapacitated patient would want to be recorded. Once a video feed is started, families can take photos or make permanent recordings of the video showing the patient or the nurse. Families might also observe an error, and although health care professionals have an obligation to disclose errors, information could be misinterpreted, or family access to information about who was responsible could jeopardize therapeutic alliances and undermine patient care.In Sam's case, Sam had the capacity to make decisions and could agree to, or indeed decline, virtual visitation. Many patients, however, are unable to provide permission and discover upon their recovery that they have been included in video calls. In a study of health care professionals from the United Kingdom, survey respondents reported the perceived distress this caused to families when practices varied between units and hospitals. Some units would facilitate virtual visitation without patient consent, whereas others required such consent.5 This variation in practice highlights the need for institutions to develop standard protocols and procedures.Disputes with patients or their surrogates about visitation can create moral-conflict distress for the nursing team. Sam would frequently decline phone calls and offers of virtual visitation through a tablet, which created conflict between Alex and the health care team. The health care team believed that they were frequently giving Alex updates, but Alex expressed frustration and accused the team of "not letting me talk to Sam"; Alex also often expressed feeling that they did not have sufficient information to serve as Sam's surrogate decision-maker. The pandemic has probably exacerbated workplace violence as a result of higher stress and anxiety among patients, families, and health care workers, leading to an increase in verbal threats.16 Verbal threats are less likely to be reported than physical violence, which suggests that health care organizations may not be robustly capturing this negative impact of the pandemic. In Sam's case, many nurses expressed feeling that Alex spoke in a threatening tone. Although nurses should not be subjected to verbal or physical abuse in the workplace, we have noted times when health care workers' own racial or socioeconomic biases seem to affect their perception of an individual or a situation. A balance must be struck between supporting nurses who perceive that they are experiencing verbal abuse and addressing biases. Nursing ethics has a long history of commitment to social justice, and working to address unjust systems must be balanced with a nurse's duty to themselves and no tolerance for verbal abuse.9,17 We found it helpful to encourage the nursing team to engage in perspective-taking and consider why Sam's partner might express anger. For example, Alex might have felt guilty that they were unable to visit and frustrated that Sam kept declining their attempts to communicate virtually. During times when in-person visitation was not restricted, Alex might have felt angry that they were unable to take time away from work to visit, or indeed, they might have been angry about ongoing structural injustices that have meant that COVID-19 has disproportionately affected Black communities and other people of color.18Nurses are frequently told that their health care institutions take a zero-tolerance approach to workplace violence, but in reality, complex dynamics frequently mean that allowances are made for patients or visitors who are verbally abusive or violent. For example, consider patients who lack decision-making capacity and are violent, or visitors who have extreme emotional reactions but are able to return for compassionate reasons such as end-of-life visitation. Even with virtual options available, many family members understandably felt strongly that they should be able to see their loved ones despite the necessity of visitation restrictions. The responsibility for consistently enforcing and reinforcing institutionally mandated visitation policies and restrictions often falls to clinical nurses at many health care organizations. Such institutional changes can result in moral-constraint distress, as nurses are required to shift from focusing on caring relationships to reinforcing institutional rules that they might not agree with. This shift potentially risks the therapeutic and collaborative relationships that nurses in an ICU work to build with patients' loved ones.Many nurse managers and leaders stepped in to support clinical nurses and found themselves in the position of interpreting hospital policies that necessarily allowed for compassionate exceptions. Nurse managers experienced moral-conflict distress as they tried to balance these ethically laden considerations. Reflecting after a severe acute respiratory syndrome outbreak in the early 2000s, Rogers19 highlighted the need to examine ethical repercussions of visitation restrictions for future health emergencies. Rogers concluded that because health care workers have a duty to care for patients and families, organizations must accept responsibility for both making and enforcing visitation restrictions. Many health care institutions, however, found that they were not prepared for the COVID-19 pandemic, and fielding the frustration and anger of families experiencing restrictions fell to bedside clinicians.19Many organizations made exceptions to allow for in-person visitation, but disparities may be exacerbated if exceptions are made solely by individuals. Importantly, exceptions might be made more often for patients who do not have COVID-19 in order to preserve personal protective equipment and the perception of a lower risk of spread, meaning that patients with confirmed COVID-19 are less likely to receive visitation exceptions.18 As we mentioned, the COVID-19 pandemic has disproportionately affected people of color, further amplifying racial injustice.Issues related to access that create microethical complexities must also be considered when using virtual technologies. Patients who do not have their own device or are unable to hold a device must rely on the availability of hospital equipment and an employee to assist them. Patients with visual or hearing impairments may not be able to use the technology effectively, raising the question of whether visitation policies should allow exemptions for this patient population. Families may not have access to the technology required for virtual visitation, such as a high-speed internet connection and a phone or computer with a camera, and many resources that were previously available, such as libraries and community centers, have been closed. Older adults and other individuals may not feel comfortable using the technology. Because of the unprecedented nature of COVID-19, rapid changes were required to ensure that patients and families were not entirely isolated. Moving forward, health care institutions and services should consider ways they can bridge the "digital divide" and ensure equitable access to devices in order to facilitate virtual visitation.Families are often overwhelmed the first time they come into an ICU. As they sit by the patient's bed each day, they may observe the patient deteriorating and see subtle changes in the patient's condition. When these visits happen at a distance, the family may visualize their loved one for only a few minutes a day, if at all, and rely on complex information from a team with whom they have had less opportunity to build a relationship. When Sam was acutely ill and lacked decision-making capacity, the health care team often had to call several times in order to reach Alex to discuss the risks and benefits of recommended interventions and obtain informed consent. Alex frequently did not answer the phone and requested more time to make decisions. This raised questions for many members of the health care team about Alex's reliability and understanding of the situation. Health care teams depend on families to act as surrogate decision-makers and ask them to make decisions on the basis of substituted judgment or best interests.20 Such decisions require knowledge of complex an understanding of the patient's and preferences, and a with the health care team. information and building can be made more when using virtual A the pandemic that surrogates to patients' end-of-life in of who are not able to be at the bedside may it even more to make complex decisions. The health care team and the family may experience distress as they attempt to these many health care visitation exceptions included end-of-life After months in the ICU, Sam began to deteriorate by institutional the health care team made exceptions to allow both Alex and Sam's friend to come into the ICU. After they of Sam at the bedside. teams that had supported Sam throughout their stay came to their final In the after Sam's many nurses of and Sam had of clinical that allowed family to be in their is not of continue to that most patients want family members during and at the end of life, and that families feel that it is their duty to be during and for the family include lower of stress and Families who may previously have been unable to make it to the hospital can now be offered the of being however, we do not whether those same benefits to virtual In these one nurse can hold the while another that is and for that the family may want to end the virtual During in-person visitation, a nurse would continue to comfort the family and in spiritual care microethical decisions about whether to sit with the family or hold their are of a During virtual after a patient a nurse can and the but this may feel both and for a family and the nurse's to care for the of a may depend on one's but nurses in the United perceive as a the to be connected with a loved one at the end of feel a moral obligation to provide this of a death to the patients in their Nurses have been to the of but the impact of a and to ensure that the patient that presence at the end of their life is Many nurses and other health care workers may experience moral-constraint distress because they feel by their to provide only this virtual connection and a moral Nurses may act as a surrogate which increases their psychological burden and emotional and many an emotional in hearing the of families to their loved the COVID-19 pandemic, technology began to be used in order to preserve therapeutic and relationships for patients. The use of virtual technology has had both positive and negative ethical and, as we have it has created microethical for critical care In a survey by et health care professionals perceived benefits to patients of virtual technology, such as reduced psychological distress the to patients and patient with physical also reported an increased of from seeing their patients connect with loved ones however, multiple barriers to virtual visitation, such as a lack of staff to facilitate a lack of family access or families to use devices, and privacy As the pandemic we must continue to consider the ethical issues technology has such as equitable access to technology, safety, moral distress, and increased nursing those who have access to the technology, virtual may have some of the barriers and risks to visitation. Black and individuals have had higher of during the which impact the to to visit loved Black and individuals in also are more likely to rely on which a risk of exposure to Although virtual visitation may provide from it is not an for As Cuchetti and Grace2 nurses need to take a critical stance when the use of virtual technology in have experienced distress as they have tried to balance their obligation to care for patients and to maintain their own personal safety throughout the pandemic. virtual visits is nurses would up the tablet, provide an answer and the with the patient so that they can continue with other care As we continue to provide virtual visitation, nurses should be offered on the technology and be given the opportunity to ask questions related to its Nurses would probably from about how to communicate and with patients and families about to need to provide on how to address ethical such as the use of technology and policies regarding access continuous 24-hour Many in the United have ethical for during the pandemic, but this does not include the ethical use of virtual technology in the et noted that many on from the United on the of virtual visitation, but varied regarding was in a patient's best Virtual visitation may support relationships between patients and their families, but it also increases emotional and for is important to recognize that to virtual for visitation, for patients who are at the end of life, may have a impact on who may experience stress and of moral distress. should provide resources to address both psychological and moral distress among health care workers and The pandemic has new ethical challenges and exacerbated and resources should be to address moral distress, such as ethics services for decision-making at an individual and a and moral distress provide nursing we must be critical and about the ways in which we use technology. The COVID-19 pandemic has required changes to be We forward, it be important to technology with a for ongoing of a and its impact on the the the and the practice environment. The pandemic has required in which and making do not at the bedside. In order to may be with team members in Virtual updates to families may during these both of these risk bedside nurses and potentially patients. Because nurses are with patients and often act as the with the patient and the must to ensure nurses are included in the decision-making as their would is a of that individuals as and can when nurses are not into at that in ethical practice nurses must be teams must work leaders must support resources should be and policies must be that protect we to life with COVID-19, we that virtual technology would facilitate and a between nurses and We have seen throughout the pandemic how technology can to some patients and loved ones, and As with many other of this pandemic, however, use of such technology in the ICU setting issues of justice, and Sam, in their immunocompromised state, and was able to their in when to have virtual virtual visitation and did not replace in-person these technologies are available, they have to understanding of patients and to rather than the patients for whom we

Information is a key issue for people who use health services and their families and friends. In the UK, this was raised consistently by those involved in a national ‘listening exercise’, in 2005.1 The resulting White Paper Our Health, Our Care Our Say2 reinforced much of the government information strategy published in the previous year.3 The Brain and Spine Foundation is a UK-based charity that aims to improve the quality of life for people with neurological conditions (http://www.brainandspine.org.uk). The organization was awarded a grant by the Department of Health to produce a toolkit to help health and social care professionals providing information to people affected by neurological conditions. The project forms part of the implementation of The National Service Framework (NSF) for Long-term Conditions, published last year.4 The toolkit is being developed in association with the Neurological Alliance (http://www.neural.org.uk) and the Long-term Medical Conditions Alliance (LMCA; http://www.LMCA.org.uk). A series of small discussion groups were held last year throughout England and Wales to explore: (i) current obstacles in the provision of and access to information, (ii) how a toolkit might be used and (iii) to refine the toolkit's content and shape. Discussions were held with groups of people affected by neurological conditions, with voluntary sector organizations concerned with neurological conditions and with mixed groups of health and social care professionals from a variety of settings. In addition, a questionnaire survey of health and social care professionals was conducted. Care for people with neurological conditions in the UK has been very patchy. While there are some world-class centres of expertise, there are also areas of the country where there is little specialist provision.5 Traditionally, for people with neurological conditions, the majority of input has been provided by specialists (e.g. neurologists and rehabilitation consultants). However, because of shortages in these workforces, and the long-term nature of many of the conditions, people have often been left without specialist support. Access to information has become a major issue for these people who may have little contact with health and social care professionals after initial diagnosis of their condition. This is consistently reported both by individuals affected by neurological conditions as well as organizations representing them.5 A key issue explored in developing the toolkit relates to why people do not get the information they want, despite much information apparently being available, and from a proliferation of sources. Two explanations were found. First, information provided by health professionals does not always match with the information sought after by people with neurological, and other long-term conditions. Secondly, people often want very local information, whereas what is generally available is not specific to their geographical location or situation. These issues are explored further below. Another issue that became evident was that health and social care professionals did not always recognize their role in relation to providing information to people with whom they came into contact. There is a need to encourage health-care professionals to view every consultation as an opportunity to assess information needs and ensure that these are met directly or by referral to a dependable alternative source. The toolkit will, therefore, aim to signpost to sources of information on the issues of concern to people with neurological conditions. It was found that there are four key areas consistently identified by people affected by neurological conditions where they want more information. Interestingly, the groups of health and social care professionals consulted also identified these issues as a problem area for information giving. The lack of information related to benefits, employment and finance was an issue raised repeatedly by people with neurological conditions when they discussed information. When asked what information requests they found difficult to address, health professionals also identified information about benefits. This is not a new issue and surveys from the neurological charities have been reporting this for years.6 It is possible that the reason this issue has not been addressed is that health professionals do not see such issues as within their remit. These ‘social care issues’ are often seen as being the province of those working outside health-care settings. There may be a tendency to see people with a diagnosis of a long-term condition as having a continuum of needs; starting with medical needs, and medical information needs, at the diagnostic phase and progressing to ‘social’ needs later on as someone adapts to their illness or disability, and particularly if it progresses/degenerates. However, when people with neurological conditions talk about their information needs, it is clear that some of their first concerns on diagnosis are their employment and financial status –Should I go back to work tomorrow? What should I tell my employer? If I leave work how will I support myself and my family? What support will my partner get if they need to look after me? Should I move house? The health professional is more likely at this time to be focused on providing information about possible treatment options or a drug regime. Concerns about sex and relationship issues were often raised (even in focus groups where people who did not know each other). People had found information on sources of support very hard to access. Health and social care professionals were similarly at a loss to know where to go for such information. There seemed to be a tendency to hope the questions were not asked and very few health-care professionals said that they would ever raise the issue as they would not know how to deal with this or whom to refer to. This is a significant quality of life issue for people affected by many neurological, and other long-term conditions, including cancer. There is a need to address it and ensure that health and social care professionals are signposted to sources of information and advice. Complementary therapies have played a large part in the management of neurological conditions, partly because of the fact that there are often very few surgical or drug treatments available. Many health professionals find it difficult to provide information about treatments that they feel do not have a robust evidence base and that have not been traditionally available in the National Health Service (NHS). While for some conditions this is changing, it is likely that people with a life-long illness for which there is no cure will continue to seek both ‘wonder cures’ and palliative treatments. Using the toolkit health professionals will be able to signpost people to information about various complementary therapies and information about which therapies people with a similar condition have found helpful. This kind of information is often available through local and national voluntary sector organizations. Providing a diagnosis and prognosis is clearly within the domain of health-care professionals, yet all agree it is a difficult area to address. People affected by neurological conditions often report that they do not get adequate information about what to expect. Again this possibly stems from the fact that there was, and still is for many, very little that can be offered in the way of treatment and cure. Neurological conditions can also be very unpredictable. If health-care professionals view their domain as providing information about treatment options and medicines there may well be limited information they can give. There are, however, as outlined above, a range of other information needs that people with neurological conditions have at diagnosis. If these needs are addressed it is likely both that people would feel more able to manage their condition and also report that their information needs had been met. The information people often valued the most, and which they found hard to access, was about local services and sources of support. For example, people talked about finding someone who could help them fill in their benefit form, the local rehabilitation service that accepted self-referrals, the MS support group that met two streets away, yet had taken 18 months to discover. Addressing local information presents a challenge for a toolkit that has been designed for health and social care professionals across England and which will necessarily be focused at a countrywide level. As noted above, however, this is a crucial finding of the work conducted with people affected by neurological conditions. Those working on the Better Information3 strategy also identified the need for local information and the Department of Health has recently announced their intention to pilot a local integrated approach to information in order that local health and social care organizations jointly maintain an accessible database of all services and support groups in their local area.2 The project will provide a template for local information in the toolkit outlining what information should be available, based on issues that people affected by neurological conditions have raised as information needs, and indicating possible local sources of information and support locally. The ground work will necessarily be conducted at a local level, but it is hoped by providing a template and sources list we will avert excessive duplication of effort, whilst ensuring that the content of local directories and databases are focused on the needs of people affected by neurological conditions. In addition, it will be very important to ensure local voluntary organizations supporting and representing people with neurological conditions are involved in commissioning local information databases. This will be essential; to ensure firstly that the resource is focused on local needs; secondly, that the very valuable services and support provided by voluntary sector groups are included and thirdly, because of the local knowledge they have about sources of health and social care support in its widest sense. Often, during the discussions with people affected by neurological conditions, they talked about eventually tracking down the information, or service or person, through contact with a local support group or voluntary organization. For example, if you wanted to know who could help you fill out a benefit form, how to get a wheelchair, where to get hydrotherapy, who to talk to about a relationship problem the local branch of the Parkinson's Disease Society or MS Society would be a very good starting point. At national level, voluntary sector organizations produce the information often reported to be the most useful by people affected by neurological conditions. Most include in their information portfolios fact sheets and booklets about the issues raised above (complementary therapies, sex and relationships, prognosis, benefits) and about many other aspects of living with a neurological condition. There is reluctance, however, amongst health and social care professionals to provide information about these organizations to people affected by neurological conditions. A survey by the Motor Neurone Disease Association7 in 2002 found that 44% of people diagnosed with motor neurone disease that year had not been told of the Association or given contact details. In the discussions to develop the toolkit people often reported stumbling on a local or national voluntary organization ‘by accident’. The toolkit will need to make it easier for health professionals to signpost to these sources of information and support. Health professionals may feel better assured about directing people to voluntary sector sources of information if they could guarantee the quality. The Department of Health have also recently announced the intention to develop an Information Accreditation Scheme (IAS).3 It will be very important that voluntary sector providers of information are enabled to participate in this scheme in order that they can continue to disseminate the information that people affected by neurological, and other long-term conditions find so useful. A pilot version of the toolkit is currently being produced. This will be a signposting tool with generic checklists and templates. It is anticipated there will be a launch towards the end of 2006. Nikki Joule is an independent health policy consultant and Project Officer at the Brain and Spine Foundation (http://www.brainandspine.org.uk). She is also on the Steering Group of the Patient Information Forum (http://www.pifonline.org.uk).

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Trust Science and Inspire Hope: Our Duty of Care

The ability to collaborate as a member of interprofessional teams is essential for patient care and a core competency for students in health professions education. We developed a yearlong course, the Interprofessional Clinical Experience (ICE), to introduce first-year medical students to team-based aspects of the health care environment and provide them with a foundation upon which later experiences can grow. The course uses experiential learning and critical reflection through reflective writing to orient students to working with care teams. Students receive assessments from faculty and various health care professionals. The course requires students to describe the roles and responsibilities of a variety of health care professionals, utilize effective communication with other health professionals on health care teams, demonstrate the ability to work on an interprofessional team, and examine their own and others' perspectives by engaging in self-directed learning and reflective practice. Annual course evaluations revealed that the majority of students agreed or strongly agreed that ICE contributed to their understanding of the health care team's roles and improved their ability to communicate with health care professionals, their understanding of health care systems, and their ability to work on an interprofessional team. The course also provides curricular content for the newly implemented Liaison Committee for Medical Education's accreditation requirement on interprofessional collaborative skills. The first implementation of this resource demonstrated that students met the educational objectives of the ICE and gained a better sense of the health care system and teams.

In Denmark ICT is a central part of almost all healthcare professionals' daily practices, and patients are increasingly encouraged to take and active interest in own health data. Therefore, ICT is an important part of what happens at consultations between the patients and the healthcare professionals. We explore the impact of ICT based on a survey of citizens'/patients' experience of interaction with healthcare professionals. How often and for what ICT was used in communication with the patients in different sectors of the Danish healthcare. The results show that ICT is used in communication with citizens and during interaction with patient, however the use of ICT is mostly for the healthcare professionals own benefit and only about 15%-39% of the reported instances ICT was used to communication and interact with the patient. Through the concept of boundary objects we proposes a model that split the object of the technology mediated information into three setting for communication between patients and healthcare professionals. We propose further studies into how ICT can be used to explore the possibilities for more interactive and involving care processes as a key element in further development of eHealth.