Evaluating methods for engaging children in healthcare technology design

Examples of user involvement can be found throughout healthcare literature. This extends to the design and development of healthcare technology where the involvement of users has been found to positively impact the quality and safety of products. However, there is currently little known about which methods are the most appropriate for involving children in technology development. The research applied and developed a framework to guide the use of methods in the design and development of healthcare technology for upper limb rehabilitation in children with cerebral palsy. Utilising an assessment framework to explore the suitability of four interview methods for involving children in the design and development of healthcare technology, research was carried out in primary schools in the United Kingdom. The research team i) used the assessment framework to guide the collection of information for comparing methods for involving children; ii) considered additional criteria for inclusion in the framework; and iii) gathered observations and data to comment on the criteria in relation to the four interview methods. Children were able to participate in all four interview methods, although further consideration is needed to identify how children with disabilities can be involved in design activities forming part of interview methods. Differences were found between the methods relating to their robustness, reliability, validity, efficiency, enjoyment and cost. The involvement of participants with a disability highlighted the need to develop new methods that support their inclusion in healthcare technology design work. The assessment framework applied in this research was useful to inform the comparison of methods and represents a step towards a more unified approach to understanding how best to capture the perspectives of children to develop technology that meets their needs

Identifying professionals' needs in integrating electronic pain monitoring in community palliative care services: an interview study

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited. Aim: To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Design: Qualitative study using face-to-face interviews. Data were analysed using framework analysis Setting/participants: Purposive sample of health professionals managing the palliative care of patients living in the community Results: Fifteen interviews with health professionals took place. Three meta-themes emerged from the data: 1) Uncertainties about integration of PainCheck and changes to current practice; 2) Appraisal of current practice; 3) Pain management is everybody’s responsibility Conclusions: Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed

Mobile devices in palliative care services: a methodological approach to identifying use and implementation

The use of mobile devices is developing in palliative care services, promising enhancements to patient care and service delivery. However, mobile device use is not well documented in the research literature even though it is necessary to understand how its use is developing in the medical field. Therefore, an online survey was developed in English, French and Arabic and distributed across palliative care providers in the 33 out of 54 countries in Africa where palliative care services are present. The survey gathered information about the service provided where a respondent was based, and a framework was presented to respondents documenting the different stages of palliative care delivery (ie, diagnosis, referral, up to bereavement care). For each stage of delivery, participants were asked to outline how they currently use mobile devices and to specify any perceived barriers and benefits to mobile device development at their site, alongside thoughts on priorities for future research development. The results of this survey, and the priorities it indicates, will be presented

Ethnicity and palliative care - we need better data: five key considerations

Good quality data on ethnicity is crucial for demonstrating the extent and impact of ethnic disparities within healthcare. However, data must be collected well and used responsibly. We outline five key considerations: (1) Improvement of ethnic group categories. (2) Sensitive, proportionate and timely data collection. (3) Support for staff collecting data. (4) Building public trust in data. (5) Responsible and contextualised use of ethnicity data. Palliative care seeks to adopt a holistic approach to the person and their total pain. By extending this ethos to ethnicity data collection and use, comprehensive and high-quality data could facilitate monitoring practice and disparities

Mapping and Visualization of Cancer Research in Indonesia: A Scientometric Analysis

Introduction The incidence of cancer and its prevalence are increasing in Indonesia. It is crucial to ensure national cancer policies are evidence-based and promote research. While cancer research is being conducted across Indonesia, the extent and focus of research activities are not known, with no existing synthesis of the cancer research landscape. We seek to address this gap by characterising trends in the extent and types of cancer research conducted in Indonesia. Methods Scientometric study using descriptive analyses to determine annual growth patterns in publications across all cancer research literature from Indonesia. We developed a classification system for both research type and study design which was applied to all included publications. A visualisation software tool (VOSviewer) was used to explore the geographical distribution of research activity. The Wilcoxon rank-sum test was used to determine the influence of international collaboration on the impact factor of journals in which articles were published. Results We retrieved 1773 cancer-related articles published by Indonesia-affiliated authors from 1961 to 2020, with notable year-on-year increases in the annual total number of published articles since 2015. Most articles (84.0%) were published by authors affiliated with institutions on Java Island. The most commonly published article type was basic research and discovery science (28.8%), using a one-group analytical study design (28.8%). International collaboration was significantly correlated with a higher h-index of the journal in which research was published (P < .0001, r = .317). Conclusion An increase in the number and range of topics explored in cancer-related publications over time was identified. The summary of the current corpus of cancer-related research for Indonesia can be used to direct the development of the national cancer control plan alongside informing the national cancer research strategy. Our novel and feasible scientometric approach can be used to direct future national and regional mapping of cancer research

Capturing differences in dental training using a virtual reality simulator

Virtual reality simulators are becoming increasingly popular in dental schools across the world. But to what extent do these systems reflect actual dental ability? Addressing this question of construct validity is a fundamental step that is necessary before these systems can be fully integrated into a dental school's curriculum. In this study, we examined the sensitivity of the Simodont (a haptic virtual reality dental simulator) to differences in dental training experience. Two hundred and eighty-nine participants, with 1 (n = 92), 3 (n = 79), 4 (n = 57) and 5 (n = 61) years of dental training, performed a series of tasks upon their first exposure to the simulator. We found statistically significant differences between novice (Year 1) and experienced dental trainees (operationalised as 3 or more years of training), but no differences between performance of experienced trainees with varying levels of experience. This work represents a crucial first step in understanding the value of haptic virtual reality simulators in dental education

Feedback and motor skill acquisition using a haptic dental simulator

Aim: To investigate the effect of qualitatively different types of pedagogical feedback (FB) on the training, transfer and retention of basic manual dexterity dental skills using a virtual reality (VR) haptic dental simulator. Methods: Sixty-three participants (M = 22.7 years; SD = 3.4 years), with no previous dental training, were randomly allocated to one of three groups (n = 21 each). Group 1 received device-only feedback during the training phase, that is the visual display of the simulator (DFB); Group 2 received verbal feedback from a qualified dental instructor (IFB); and Group 3 received a combination of instructor and device feedback (IDFB). Participants completed four tasks during which feedback was given according to group allocation as well as two skills transfer tests. Skill retention was examined immediately after training, at 1 week and at 1 month post-test. Results: Statistically significant differences were found between the groups in overall performance (P < 0.001) and error (P = 0.006). Post hoc comparisons revealed the IDFB group produced substantially better performance and fewer errors in comparison with DFB and IFB training. This difference translated to improved performance in skill retention and generalisation of knowledge to novel tasks. Conclusion: These data indicate that the acquisition and retention of basic dental motor skills in novice trainees is best optimised through a combination of instructor and visual display (VR)-driven feedback. The results have implications for the utility and implementation of VR haptic technology in dental education

Impact of mobile technologies on cervical cancer screening practices in Lagos, Nigeria (mHealth-Cervix): Protocol for a randomised controlled trial

Background: Incidence and mortality from cervical cancer have remained high due to many obstacles facing the implementation of organized screening programs in resource-constrained countries such as Nigeria. The application of mobile technologies (mHealth) to health services delivery has the potential to reduce inequalities, empower patients to control their health, and improve the cost-effectiveness of health care delivery. Aim: To assess the efficacy of mobile technology intervention on Pap test screening adherence compared to a control condition and also determine the factors affecting the uptake of Pap smear screening practices among women in Lagos. Methods: This is a multi-center randomized controlled trial that will involve women aged 25 to 65 years attending the General Outpatient clinics of the two tertiary health institutions in Lagos, Nigeria between April and December 2020. At baseline, a total of 200 National Health Insurance Scheme (NHIS) enrollees will be randomized to either a text message arm or usual care (control) arm. The primary outcome is the completion of a Pap smear within 6 months of enrolment in the study. The associations between any two groups of continuous variables will be tested using the independent sample t-test (normal distribution) or the Mann-Whitney U test (skewed data) and that of two groups of categorical variables with Chi-square X2or Fisher's exact test where appropriate. Using binary logistic regression model, we will adjust for age and other relevant sociodemographic and clinical variables and adherence to Pap test screening. Statistical significance will be defined as P-value less than 0.05. Discussion: The mHealth-Cervix study will evaluate the impact of mobile technologies on cervical cancer screening practices in Lagos, Nigeria as a way of contributing to the reduction in the wide disparities in cervical cancer incidence through early detection facilitated using health promotion to improve Pap smear screening adherence. Registration: PACTR202002753354517 13/02/202

“Alas … my sickness becomes my family's burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia

Introduction Limited research exists exploring the experience of living with advanced breast cancer in Indonesia. We sought to explore the narratives of women with breast cancer across the illness trajectory to understand their experiences from diagnosis to accessing and undergoing cancer treatments to inform the development of cancer care. Methods A nested, exploratory study adopting a qualitative approach. We conducted in-depth face-to-face interviews with women living with advanced breast cancer in Yogyakarta, Indonesia. We purposively sampled participants by age, education and marital status. All interviews were transcribed verbatim with thematic analysis used to identify, analyse and report patterns and themes within the data. Findings Four main themes were derived: 1) Early experiences, prior to accessing health care; 2) Navigating the system to access treatment; 3) Enduring chemotherapy and advancing disease, with crucial family support; 4) Seeking normalcy and belief in treatment. From initial symptoms through to undergoing treatments, the experience of participants was punctuated by barriers and challenges. Discussion Presentation delays were driven by dismissing initial symptoms, seeking alternative medicines, and fear of surgery. Access to healthcare required participants to contend with long-distance travel to facilities, tiered and convoluted referral processes, and adverse effects and financial impact of treatments. Individual determination, belief in God, and the role of families were critical throughout the disease trajectory. Adopting a focus across the disease trajectory facilitated the identification of enduring and persistent challenges to care delivery that can inform targeted development and optimisation of care delivery for women with breast cancer

Duration of palliative care before death in international routine practice: A systematic review and meta-analysis

Background: Early provision of palliative care, at least 3-4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature. Methods: We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1st 2013 and Dec 31st 2018: MEDLINE; Embase; CINAHL; Global Health, Web of Science; and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker’s criteria and the main outcome was duration of palliative care (median/mean days from initiation to death). Results: 169 studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18·9 days (IQR 0·1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). 43% of studies were rated as ‘good’ quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries. Conclusions: Duration of palliative care is much shorter than the 3-4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, including from less-developed settings, to inform benchmarking, service evaluation and quality improvement