EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis

Background: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes. Aims: With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia). Methods: We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve: 1. Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers. 2. Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity. 3. Designing a model of core components and identifying common factors across conditions, trajectories, and contexts. 4. Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design. Dissemination: We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers

INFORMAL CAREGIVER IDENTITY: VOLUNTARY JOB FIT, TEAMWORK, AND TOOLS

According to the Family Caregiver Alliance, an informal or family caregiver is “an unpaid individual . . . involved in assisting others with activities of daily living and/or medical tasks.” As informal caregiving in the United States has increased, research on the topic has been published in a myriad of disciplines (e.g., sociology, nursing, social work, and medicine). The literature has defined informal caregivers (ICGs), described their role and its impacts, detailed the costs and benefits of informal caregiving, and evaluated interventions to assist ICGs. Scholars have also investigated more natural, less experimental use of informational and support resources for ICGs than, for example, interventions via informational websites or support groups, but they have not thoroughly explored their effects. This study used semistructured interviews with ICGs catering to care recipients (CRs) with various conditions and characteristics (e.g., ages) to explore ICGs’ authentic use of caregiving-related resources for providing care and for coping with the often complex and fluctuating demands of their role. Using a theoretical sample of 25 ICGs, this grounded theory study yielded a number of findings. Study participants’ comments revealed that they conceived of informal caregiving as more akin to a volunteer job than to a career. Because the study sample contained primary, secondary, and other nonprimary caregivers, I observed that the participant’s position in the caregiving project team, in conjunction with overall team functioning, influenced their caregiving experience. The proportion of helpful resources relative to unhelpful resources, however, was not related to whether or not ICGs identified positive aspects of the job. The quality of relationships with other members of the formal and informal caregiving team proved to have more influence on whether or not ICGs identified any positive aspects of the job. In addition, the Internet proved to be a largely beneficial caregiving tool for those who used it. Although the Internet was most often used to seek information, it helped ICGs cope by enabling them to build personal coping resources and by offering social support by connecting users to similar others. These findings suggest the need for early identification of prospective caregiving team members to (1) optimize the calibration of caregiver abilities and (2) establish a division of labor to diminish the caregiving workload while building greater appreciation among team members for the contributions and capacities of the others

A tailored smart home for dementia care

Dementia refers to a group of chronic conditions that cause the permanent and gradual cognitive decline. Therefore, a Person with Dementia (PwD) requires constant care from various types of caregivers (e.g., informal, social and formal). It is commonly accepted that utilising Smart Homes (SH), as an instance of Ambient Assisted Living (AAL) technologies, for dementia care could potentially facilitate the care and consequently improve the quality of PwDs’ well-being. Nevertheless, most of the studies view dementia care as a straight application of standard SH technology without accommodating the specific requirements of dementia care. A consequence of this approach is the inadequacy and unacceptability of generic SH systems for the stakeholders of dementia care. This work considers the specific requirements of PwDs and their care circle in all development steps of an SH, such as design, implementation, and evaluation. It investigates how utilising novel design and computing approaches can enhance the quality of SHs for dementia care and consequently improve healthcare and wellbeing of PwDs. To do so, the thesis first studies the existing SHs for healthcare and identifies their drawbacks. Then, the requirements of dementia care stakeholders will be collected, analysed and reflected on in an SH system design. Extensions and adaptation of existing frameworks and technologies will be proposed to implement a prototype based on the design. Finally, a series of thorough evaluations and validation of the prototype will be carried out

Employing Information and Communications Technologies in Homes and Cities for the Health and Well-Being of Older People

YesHe X and Sheriff RE (Eds.) Employing ICT in Homes and Cities for the Health and Well-Being of Older People. Workshop Proceedings of ICT4HOP’16. 15-17 Aug 2016. Sichuan University, Chengdu, China.British Council, Researcher Links, Newton Fund, NSF

Mobile Health in Remote Patient Monitoring for Chronic Diseases: Principles, Trends, and Challenges

Chronic diseases are becoming more widespread. Treatment and monitoring of these diseases require going to hospitals frequently, which increases the burdens of hospitals and patients. Presently, advancements in wearable sensors and communication protocol contribute to enriching the healthcare system in a way that will reshape healthcare services shortly. Remote patient monitoring (RPM) is the foremost of these advancements. RPM systems are based on the collection of patient vital signs extracted using invasive and noninvasive techniques, then sending them in real-time to physicians. These data may help physicians in taking the right decision at the right time. The main objective of this paper is to outline research directions on remote patient monitoring, explain the role of AI in building RPM systems, make an overview of the state of the art of RPM, its advantages, its challenges, and its probable future directions. For studying the literature, five databases have been chosen (i.e., science direct, IEEE-Explore, Springer, PubMed, and science.gov). We followed the (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) PRISMA, which is a standard methodology for systematic reviews and meta-analyses. A total of 56 articles are reviewed based on the combination of a set of selected search terms including RPM, data mining, clinical decision support system, electronic health record, cloud computing, internet of things, and wireless body area network. The result of this study approved the effectiveness of RPM in improving healthcare delivery, increase diagnosis speed, and reduce costs. To this end, we also present the chronic disease monitoring system as a case study to provide enhanced solutions for RPMsThis research work was partially supported by the Sejong University Research Faculty Program (20212023)S

Case Study of Learning and Instruction for Members of an Online Reflex Sympathetic Dystrophy Support Group

Research has shown that individual members of traditional support groups gain a sense of identity and community and feelings of respect and support. Online support groups provide individuals avenues to find medical information and thus learn more about a given condition or illness. Little has been studied about the learning and instruction that occurs in online social support groups, especially in groups about chronic pain. The purpose of this qualitative case study was to explore the perceptions and experiences of members who participated in one open social support group. Siemen\u27s constructivism theory served as the basis for comprehending the learning and instruction that took place in this group, and the research questions focused on the support group members\u27 perceptions of this learning and instruction. Data were collected from 10 individuals who participated in a Facebook Reflex Sympathetic Dystrophy support group. Yin\u27s case study framework provided additional support data analysis. Data were collected through individual, semistructured telephone interviews and observations of online discussions. A combination of open and axial coding was used to support content analysis. Themes identified were learning, knowledge, persuasion, and acceptance of underlying negativity. Online social support group participation involved shared experiences that facilitated learning and instruction; these findings could influence the structures of other support groups. Positive social change occurs when individuals are knowledgeable and well educated about social support groups because it is in these groups that trends, issues, and new information are learned. Informal learning occurs with the increased digital skills, especially within a person\u27s virtual support network

Orientation method for people with cognitive disabilities

Doctoral Thesis (Degree in Biomedical Engineering)Pessoas com incapacidade (física ou cognitiva) representam uma pequena percentagem da população de um país. No entanto, os custos de saúde inerentes a este grupo de pessoas são habitualmente elevados quando comparados com uma pessoa normal. Assim, é necessário encontrar soluções que ajudem no dia a dia destas pessoas. Aquando do diagnóstico de perdas cognitivas, se tal já não tiver ocorrido, o paciente pode ser impedido de viver sozinho e a presença de um cuidador poderá ser necessária. De forma a diminuir esta invasão de privacidade e permitir uma vida independente do paciente na sua própria casa é necessária adaptar a mesma ao conceito de casa inteligente, a qual permite que o cuidador aceda de forma remota e verifique o estado do utilizador. Porém, a casa inteligente não permite a monitorização do utilizador quando este se encontra no exterior. Assim, de forma a manter-se seguro, este pode tornar-se um prisioneiro da sua própria habitação. Para que a pessoa com perdas cognitiva tenha uma normal interação com a sociedade surge a necessidade de um sistema de orientação adaptável ao exterior e que esteja em conformidade com este grupo de utilizadores. Se se considerarem os dois principais sistemas operativos para dispositivos móveis (i.e., iOS e Android) existe um grande número de aplicações que guiam o utilizador até ao destino pretendido utilizando GPS. Porém, existem muito poucas que sejam adequadas para pessoas com incapacidade. Por outro lado, para além da capacidade de orientação, existe uma outra característica deveras significativa do ponto de vista do cuidador, a capacidade de localização que lhe permite o acesso de forma remota à localização do utilizador final. Esta característica é vital uma vez que os métodos tradicionais de orientação são realmente dispendiosos, levando os cuidadores a acompanhar os pacientes durante as suas deslocações. Desta forma, tanto o tempo como os recursos despendidos durante a aprendizagem são desperdiçados. Vários autores desenvolveram sistemas de orientação adaptados tendo em consideração as características e especificidades do utilizador. A principal preocupação centrava-se na interface do utilizador, uma vez que consideravam que os sistemas disponíveis eram demasiado complexos para serem utilizados por este tipo de indivíduos. O sistema desenvolvido (i.e., CogHelper) tem uma interface adaptada ao utilizador, a qual utiliza realidade aumentada para concretizar o processo de orientação. O sistema possui também a capacidade de localização em tempo real onde o(s) cuidador(es) podem monitorizar o utilizador final. O nosso principal objectivo não recaiu sobre a interface do utilizador, uma vez que esta já tinha sido previamente estudada, mas na forma como a informação era fornecida ao utilizador. Desta forma, o caminho selecionado para guiar o utilizador é adaptado às suas preferências. De forma a prevenir possíveis erros durante o percurso, o sistema calcula possíveis pontos nos quais o utilizador pode tomar uma decisão errada, e alertá-lo de forma a manter-se no caminho correto. Estas características baseiam-se num módulo de pattern mining (para fornecer o caminho adaptado) e numa abordagem de computação especulativa (para antecipar possíveis erros do utilizador).People with disabilities (physical or cognitive) represent a small percentage of a country population. However, the health costs are usually higher when compared to an ordinary person. Thus, one should seek solutions to help the day life of such group of people. When diagnosed with cognitive disabilities the patient may be prevented to live alone and a caregiver may be needed. To avoid this privacy invasion and enable the patient to live independently in his home, there is the need to adapt it to the concept of smart house, which enables the caregiver to remotely access and check the user status. However, the smart house is not able to monitor the user when he goes outside its premises. Thus, in order to keep the user safe, he may become a prisoner of his own home. To engage people with cognitive disabilities in a normal interaction with the surrounding environment there is the need of a portable orientation system that works outdoors and is adapted to this audience. If one look over the two main operative systems for mobile devices (i.e., iOS and Android) there is a huge number of applications that guides the user through GPS to the intended destination. However, there are just a few adapted to people with disabilities. Besides the orientation feature there is also another important one from the perspective of the caregivers, i.e., a localization feature which allows these second type of users to remotely access the main user location. This is specially important since traditional methods are very expensive, and due to this lack of information caregivers tend to be all the time with the patient during his journey. Thus, the effort and resources spent to teach the user are wasted. Different authors had developed adapted orientation systems considering the user specificities and characteristics. Their main concern was the user interface, since they considered that available systems were too complex to be used by these group of people. The system that was developed (i.e., CogHelper) has an adapted interface, which uses augmented reality to provide the orientation to the user. It has also a real-time localization feature where caregivers may know the user location. Our focus was not on the user interface, since it was already studied, but on how to provide the necessary information to the user. Thus, the path followed by the user is adapted to his preferences. In order to avoid mistakes during the traveling path, the system may calculate possible locations in which the user takes the wrong turn and alert him to keep on the correct path. These features are based on a pattern mining module (to provide the preferred path) and on a speculative computation approach (to anticipate possible user mistakes).The work of João Ramos is supported by a doctoral grant by FCT - Fundação para a Ciência e a Tecnologia (SFRH/BD/89530/2012)

Enhancing the Quality of Care in Long-Term Care Settings

Quality of care in long-term care is a worldwide issue given the growing numbers of dependent older people. This book presents international research, 22 varied papers, exploring quality of care from several different angles. Important themes include: (1) workforce issues, such as staff training and support; job competencies, satisfaction, and intention to stay in work; staff burnout; effects of personal- and work-related factors on quality of care; (2) intervention studies: for depressive symptoms in nursing home residents; adjustment for new residents; social and psychological support; and loneliness and isolation; (3) methodology, including: developing and testing quality indicators; measuring residents' experience of quality; and assessing partnership between staff and families; and (4) older people's experiences, such as dry eyes and using ocular lubricants; associations between length of stay and end of life care; palliative care service use and comfort at end of of life; and causes of infection-related hospitalization. The book concludes with a systematic review of the current evidence base of care home research in Brazil