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Abstract BackgroundThe number of older people with unmet health care and support needs is increasing substantially due to the challenges facing health care systems worldwide. There are potentially great benefits to using the Internet of Things coupled with artificial intelligence to support independent living and the measurement of health risks, thus improving quality of life for the older adult population. Taking a co-design approach has the potential to ensure that these technological solutions are developed to address specific user needs and requirements. ObjectiveThe aim of this study was to investigate stakeholders’ perceptions of independent living and technology solutions, identify stakeholders’ suggestions on how technology could assist older adults to live independently, and explore the acceptability and usefulness of a prototype Internet of Things solution called the NEX system to support independent living for an older adult population. MethodsThe development of the NEX system was carried out in 3 key phases with a strong focus on diverse stakeholder involvement. The initial predesign exploratory phase recruited 17 stakeholders, including older adults and family caregivers, using fictitious personas and scenarios to explore initial perceptions of independent living and technology solutions. The subsequent co-design and testing phase expanded this to include a comprehensive web-based survey completed by 380 stakeholders, encompassing older adults, family caregivers, health care professionals, and home care support staff. This phase also included prototype testing at home by 7 older adults to assess technology needs, requirements, and the initial acceptability of the system. Finally, in the postdesign phase, workshops were held between academic and industry partners to analyze data collected from the earlier stages and to discuss recommendations for the future development of the system. ResultsThe predesign phase revealed 3 broad themes: loneliness and technology, aging and technology, and adopting and using technology. The co-design phase highlighted key areas where technology could assist older adults to live independently: home security, falls and loneliness, remote monitoring by family members, and communication with clients. Prototype testing revealed that the acceptability aspects of the prototype varied across technology types. Ambient sensors and voice-activated assistants were described as the most acceptable technology by participants. Last, the postdesign analysis process highlighted that ambient sensors have the potential for automatic detection of activities of daily living, resulting in key recommendations for future developments and deployments in this area. ConclusionsThis study demonstrates the significance of incorporating diverse stakeholder perspectives in developing solutions that support independent living. Additionally, it emphasizes the advantages of prototype testing in home environments, offering crucial insights into the real-world experiences of users interacting with technological solutions.

PurposeHealth literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors.MethodsInformal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress.ResultsSeven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden (‘Understanding care recipient needs and preferences’), self-efficacy (‘Cancer-related communication with the care recipient’ and ‘Understanding care recipients needs and preferences’) and distress (‘Proactivity and determination to seek information’, ‘Understanding care recipient needs and preferences’, ‘Understanding the healthcare system’).ConclusionFindings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills.Implications for cancer survivorsFindings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Objectives This study aimed to explore the work experiences of people living with an oligodendroglioma.Design This was a descriptive qualitative study. One-time semi-structured interviews exploring supportive care needs were conducted; work was discussed at various points throughout each interview. An inductive thematic analysis was undertaken.Setting Participants were recruited across the UK through four National Health Service hospitals and the Brain Tumour Charity research involvement networks.Participants 19 people with grade 2 or 3 oligodendroglioma (mean age 52 years; male n=11). At diagnosis, 16 participants were working, 2 studying and 1 retired. At the interview (mean time since diagnosis 9.6 years; range 1–18 years), seven participants were working, eight retired (four on medical grounds) and four unable to work due to illness.Results Seven themes were constructed: (1) physical and cognitive limitations; (2) work ability and productivity; (3) work accommodations; (4) changing roles; (5) attitudes of clients and coworkers; (6) feelings and ambitions; and (7) financial implications. Fatigue, seizures and cognitive deficits influenced work ability. A stressful work environment could exacerbate symptoms. Changes in job roles and work environment were often required. Employer and coworker support were integral to positive experiences. Work changes could result in financial stress and strain.Conclusions This study has highlighted, for the first time, influences on work experiences in this understudied population. These findings have implications for clinicians and employers, when considering the importance of work in rehabilitation for people with oligodendrogliomas, and the individually assessed adjustments required to accommodate them, should employment be desired.

This review aimed to examine and synthesise literature on spirituality as experienced by individuals living with terminal cancer. Six databases were systematically searched for studies with qualitative findings relevant to spirituality and terminal cancer. Thirty-seven studies were included and thematic synthesis was used to identify themes. Analytical themes included: making sense of dying; living with dying; feeling connected; and being reflective. This review highlights how the experience of spirituality can positively impact the lives of terminal cancer patients. Further, these findings suggest that spirituality can be a transformative experience that allows individuals to experience peace at end of life.

BackgroundIn a rapidly aging population, new and efficient ways of providing health and social support to older adults are required that not only preserve independence but also maintain quality of life and safety. ObjectiveThe NEX project aims to develop an integrated Internet of Things system coupled with artificial intelligence to offer unobtrusive health and wellness monitoring to support older adults living independently in their home environment. The primary objective of this study is to develop and evaluate the technical performance and user acceptability of the NEX system. The secondary objective is to apply machine learning algorithms to the data collected via the NEX system to identify and eventually predict changes in the routines of older adults in their own home environment. MethodsThe NEX project commenced in December 2019 and is expected to be completed by August 2022. Mixed methods research (web-based surveys and focus groups) was conducted with 426 participants, including older adults (aged ≥60 years), family caregivers, health care professionals, and home care workers, to inform the development of the NEX system (phase 1). The primary outcome will be evaluated in 2 successive trials (the Friendly trial [phase 2] and the Action Research Cycle trial [phase 3]). The secondary objective will be explored in the Action Research Cycle trial (phase 3). For the Friendly trial, 7 older adult participants aged ≥60 years and living alone in their own homes for a 10-week period were enrolled. A total of 30 older adult participants aged ≥60 years and living alone in their own homes will be recruited for a 10-week data collection period (phase 3). ResultsPhase 1 of the project (n=426) was completed in December 2020, and phase 2 (n=7 participants for a 10-week pilot study) was completed in September 2021. The expected completion date for the third project phase (30 participants for the 10-week usability study) is June 2022. ConclusionsThe NEX project has considered the specific everyday needs of older adults and other stakeholders, which have contributed to the design of the integrated system. The innovation of the NEX system lies in the use of Internet of Things technologies and artificial intelligence to identify and predict changes in the routines of older adults. The findings of this project will contribute to the eHealth research agenda, focusing on the improvement of health care provision and patient support in home and community environments. International Registered Report Identifier (IRRID)DERR1-10.2196/35277

Introduction Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people’s lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to self-manage. Supported self-management programmes have been developed for several cancers, but the unique challenges experienced by LIGG survivors mean these programmes may not be readily transferable to this group. The Ways Ahead study aims to address this gap by exploring the needs of LIGG survivors to develop a prototype for a supported self-management programme tailored to this group.Methods and analysis Ways Ahead will follow three sequential phases, underpinned by a systematic review of self-management interventions in cancer. In phase 1, qualitative methods will be used to explore and understand the issues faced by LIGG survivors, as well as the barriers and facilitators to self-management. Three sets of interviews will be conducted with LIGG survivors, their informal carers and professionals. Thematic analysis will be conducted with reference to the Theoretical Domains Framework and Normalisation Process Theory. Phase 2 will involve co-production workshops to generate ideas for the design of a supported self-management programme. Workshop outputs will be translated into a design specification for a prototype programme. Finally, phase 3 will involve a health economic assessment to examine the feasibility and benefits of incorporating the proposed programme into the current survivorship care pathway. This prototype will then be ready for testing in a subsequent trial.Ethics and dissemination The study has been reviewed and approved by an National Health Service Research Ethics Committee (REC ref: 20/WA/0118). The findings will be disseminated through peer-reviewed journals, conference presentations, broadcast media, the study website, The Brain Tumour Charity and stakeholder engagement activities.

The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six databases were systematically searched for studies with qualitative findings relevant to CYPDs’ (aged 8–18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes important to CYPDs’ experiences and perceptions of self-management were identified: (1) negotiating independence and (2) feeling in control. The synthesis contributes to knowledge on contextual factors underpinning self-management and what facilitates or impedes transition towards autonomous self-management for CYPDs.

Objectives To audit patient hospital records to evaluate the performance of acute general and mental health services in delivering inpatient care to people with learning disability and explore the influence of organisational factors on the quality of care they deliver.Setting Nine acute general hospital Trusts and six mental health services.Participants Adults with learning disability who received inpatient hospital care between May 2013 and April 2014.Primary and secondary outcome measures Data on seven key indicators of high-quality care were collected from 176 patients. These covered physical health/monitoring, communication and meeting needs, capacity and decision-making, discharge planning and carer involvement. The impact of services having an electronic system for flagging patients with learning disability and employing a learning disability liaison nurse was assessed.Results Indicators of physical healthcare (body mass index, swallowing assessment, epilepsy risk assessment) were poorly recorded in acute general and mental health inpatient settings. Overall, only 34 (19.3%) patients received any assessment of swallowing and 12 of the 57 with epilepsy (21.1%) had an epilepsy risk assessment. For most quality indicators, there was a non-statistically significant trend for improved performance in services with a learning disability liaison nurse. The presence of an electronic flagging system showed less evidence of benefit.Conclusions Inpatient care for people with learning disability needs to be improved. The work gives tentative support to the role of a learning disability liaison nurse in acute general and mental health services, but further work is needed to confirm these benefits and to trial other interventions that might improve the quality and safety of care for this high-need group.