Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery

Background  Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.  Objective  To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation.  Design  This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action-research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40-75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.  Discussion and Conclusion  Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post-trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2-arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation

"I don't believe in leading a life of my own, I lead his life": A qualitative investigation of difficulties experienced by informal caregivers of stroke survivors experiencing depressive and anxious symptoms

This is the author accepted manuscript. The final version is available from the publisher via the DOI in this record.OBJECTIVES: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression. METHODS: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis. RESULTS: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support. CONCLUSIONS: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support. CLINICAL IMPLICATIONS: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.This work was supported by the Dunhill Medical Trust (grant number: RTF43/1111). JW was the recipient of the Dunhill Medical Trust Research Training Fellowship. DJL is supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula. We are grateful for the support provided by the Stroke Association; Different Strokes; Carers UK; Headway and Unite Devon. Additionally, we thank all the participants in the stud

Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

How a Diverse Research Ecosystem Has Generated New Rehabilitation Technologies: Review of NIDILRR’s Rehabilitation Engineering Research Centers

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a “total approach to rehabilitation”, combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970’s, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program

The Lived Experience of Informal Caregivers of Chronic Stroke Patients

The purpose of this phenomenological study is to contribute to the literature surrounding stroke-survivor caregivers and to understand the caregivers’ perspective on leisure participation and quality of life. Four caregivers of clients with chronic stroke were recruited for the study via convenience sampling. Participants were audio-recorded during a semi-structured interview lasting 60-80 minutes. The interview guide was consistent across participants and included open-ended questions about the caregiver’s leisure participation and quality of life. Recorded data was transcribed and in-vivo coding was completed. Eight categories were developed from the identified codes and narrowed into primary meaning units: role shift, loss of control, and occupational deprivation, consistent with Moustakas (1994) as adapted by Creswell (2013). Understanding the essense of the lived experience of caregivers is important to the occupational therapy profession because of the prevalence of caregiver-burden and the impact such role-transition has on their occupational participation and that of the client

Tracking Patterns of Needs During a Telephone Follow-up Program for Family Caregivers of Persons with Stroke

Purpose Programs that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention program. Method Descriptive statistics were used to analyze data from 123 stroke caregivers enrolled in the intervention group of a randomized controlled clinical trial. Caregivers received 8 weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritize current needs that were then addressed through skill-building strategies. Results Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviors was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all 9 sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3. Conclusions Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation

AI and IoT-Enabled smart exoskeleton system for rehabilitation of paralyzed people in connected communities

In recent years, the number of cases of spinal cord injuries, stroke and other nervous impairments have led to an increase in the number of paralyzed patients worldwide. Rehabilitation that can aid and enhance the lives of such patients is the need of the hour. Exoskeletons have been found as one of the popular means of rehabilitation. The existing exoskeletons use techniques that impose limitations on adaptability, instant response and continuous control. Also most of them are expensive, bulky, and requires high level of training. To overcome all the above limitations, this paper introduces an Artificial Intelligence (AI) powered Smart and light weight Exoskeleton System (AI-IoT-SES) which receives data from various sensors, classifies them intelligently and generates the desired commands via Internet of Things (IoT) for rendering rehabilitation and support with the help of caretakers for paralyzed patients in smart and connected communities. In the proposed system, the signals collected from the exoskeleton sensors are processed using AI-assisted navigation module, and helps the caretakers in guiding, communicating and controlling the movements of the exoskeleton integrated to the patients. The navigation module uses AI and IoT enabled Simultaneous Localization and Mapping (SLAM). The casualties of a paralyzed person are reduced by commissioning the IoT platform to exchange data from the intelligent sensors with the remote location of the caretaker to monitor the real time movement and navigation of the exoskeleton. The automated exoskeleton detects and take decisions on navigation thereby improving the life conditions of such patients. The experimental results simulated using MATLAB shows that the proposed system is the ideal method for rendering rehabilitation and support for paralyzed patients in smart communities. © 2013 IEEE. **Please note that there are multiple authors for this article therefore only the name of the first 5 including Federation University Australia affiliate “Venki Balasubramanian” is provided in this record*