The CARESSES study protocol: testing and evaluating culturally competent socially assistive robots among older adults residing in long term care homes through a controlled experimental trial

Background : This article describes the design of an intervention study that focuses on whether and to what degree culturally competent social robots can improve health and well-being related outcomes among older adults residing long-term care homes. The trial forms the final stage of the international, multidisciplinary CARESSES project aimed at designing, developing and evaluating culturally competent robots that can assist older people according to the culture of the individual they are supporting. The importance of cultural competence has been demonstrated in previous nursing literature to be key towards improving health outcomes among patients. Method : This study employed a mixed-method, single-blind, parallel-group controlled before-and-after experimental trial design that took place in England and Japan. It aimed to recruit 45 residents of long-term care homes aged ≥65 years, possess sufficient cognitive and physical health and who self-identify with the English, Indian or Japanese culture (n = 15 each). Participants were allocated to either the experimental group, control group 1 or control group 2 (all n = 15). Those allocated to the experimental group or control group 1 received a Pepper robot programmed with the CARESSES culturally competent artificial intelligence (experimental group) or a limited version of this software (control group 1) for 18 h across 2 weeks. Participants in control group 2 did not receive a robot and continued to receive care as usual. Participants could also nominate their informal carer(s) to participate. Quantitative data collection occurred at baseline, after 1 week of use, and after 2 weeks of use with the latter time-point also including qualitative semi-structured interviews that explored their experience and perceptions further. Quantitative outcomes of interest included perceptions of robotic cultural competence, health-related quality of life, loneliness, user satisfaction, attitudes towards robots and caregiver burden. Discussion : This trial adds to the current preliminary and limited pool of evidence regarding the benefits of socially assistive robots for older adults which to date indicates considerable potential for improving outcomes. It is the first to assess whether and to what extent cultural competence carries importance in generating improvements to well-being

Embedding ethics in the design of culturally competent socially assistive robots

Research focusing on the development of socially assistive robots (SARs) that will promote the health, well-being and quality of life of older persons and of their caregivers has been growing in recent years. This growth has prompted a great deal of ethical reflection on the future of SARs in care, but there is an increasing awareness of the divide that often separates the settings in which ethics research and debate take place from those where technological innovation is practiced. Different frameworks have been proposed to handle the ethical dimension of technology from within the design and development process, including Value Sensitive Design (VSD). VSD has been defined as a theoretically grounded approach to the design of technology that accounts for human values in a principled and comprehensive manner throughout the design process. Inspired in part by VSD, we have developed a process geared towards embedding ethics at the core of CARESSES, an international multidisciplinary project that aims to design the first culturally competent SAR for the care of older adults. Here we describe that process, including how we utilized qualitative thematic analysis to extract key ethical concepts from relevant ethical guidelines (Alzheimer Europe's Guidelines and Position on the Ethical Use of Assistive Technologies for/by People with Dementia), and how we applied those concepts to the scenarios that describe how the CARESSES robot will interact with individuals belonging to different cultures and provide the grounding for its cultural competence. This straightforward approach highlights the ethical implications of the robot’s behavior during the design process and thus it enables researchers to identify and engage with ethical problems proactively, rather than restrict ethics to retrospective assessments. With suitable modifications, it may be usefully applied in other research projects involving SARs

Development and Validation of an Italian Adaptation of the Psychosocial Aspects of Hereditary Cancer Questionnaire

Individuals that attend cancer genetic counseling may experience test-related psychosocial problems that deserve clinical attention. In order to provide a reliable and valid first-line screening tool for these issues, Eijzenga and coworkers developed the Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire. The aim of this work was to develop an Italian adaptation of the PAHC (I-PACH). This prospective multicenter observational study included three stages: (1) development of a provisional version of the I-PAHC; (2) pilot studies aimed at testing item readability and revising the questionnaire; and (3) a main study aimed at testing the reliability and validity of the final version of the I-PAHC with the administration of a battery comprising measures of depression, anxiety, worry, stress, and life problems to 271 counselees from four cancer genetic clinics. Adapting the original PAHC to the Italian context involved adding two further domains and expanding the emotions domain to include positive emotions. While most of the items were found to be easy to understand and score, some required revision to improve comprehensibility; others were considered irrelevant or redundant and therefore deleted. The final version showed adequate reliability and validity. The I-PAHC provides comprehensive content coverage of cancer genetic-specific psychosocial problems, is well accepted by counselees, and can be considered a sound assessment tool for psychosocial issues related to cancer genetic counseling and risk assessment in Italy

Comprehensive Analysis of 5-Aminolevulinic Acid Dehydrogenase (ALAD) Variants and Renal Cell Carcinoma Risk among Individuals Exposed to Lead

BACKGROUND: Epidemiologic studies are reporting associations between lead exposure and human cancers. A polymorphism in the 5-aminolevulinic acid dehydratase (ALAD) gene affects lead toxicokinetics and may modify the adverse effects of lead. METHODS: The objective of this study was to evaluate single-nucleotide polymorphisms (SNPs) tagging the ALAD region among renal cancer cases and controls to determine whether genetic variation alters the relationship between lead and renal cancer. Occupational exposure to lead and risk of cancer was examined in a case-control study of renal cell carcinoma (RCC). Comprehensive analysis of variation across the ALAD gene was assessed using a tagging SNP approach among 987 cases and 1298 controls. Occupational lead exposure was estimated using questionnaire-based exposure assessment and expert review. Odds ratios (OR) and 95% confidence intervals (CI) were calculated using logistic regression. RESULTS: The adjusted risk associated with the ALAD variant rs8177796(CT/TT) was increased (OR = 1.35, 95%CI = 1.05-1.73, p-value = 0.02) when compared to the major allele, regardless of lead exposure. Joint effects of lead and ALAD rs2761016 suggest an increased RCC risk for the homozygous wild-type and heterozygous alleles ((GG)OR = 2.68, 95%CI = 1.17-6.12, p = 0.01; (GA)OR = 1.79, 95%CI = 1.06-3.04 with an interaction approaching significance (p(int) = 0.06). No significant modification in RCC risk was observed for the functional variant rs1800435(K68N). Haplotype analysis identified a region associated with risk supporting tagging SNP results. CONCLUSION: A common genetic variation in ALAD may alter the risk of RCC overall, and among individuals occupationally exposed to lead. Further work in larger exposed populations is warranted to determine if ALAD modifies RCC risk associated with lead exposure

Pathway-Based Analysis of a Melanoma Genome-Wide Association Study: Analysis of Genes Related to Tumour-Immunosuppression

Systemic immunosuppression is a risk factor for melanoma, and sunburn-induced immunosuppression is thought to be causal. Genes in immunosuppression pathways are therefore candidate melanoma-susceptibility genes. If variants within these genes individually have a small effect on disease risk, the association may be undetected in genome-wide association (GWA) studies due to low power to reach a high significance level. Pathway-based approaches have been suggested as a method of incorporating a priori knowledge into the analysis of GWA studies. In this study, the association of 1113 single nucleotide polymorphisms (SNPs) in 43 genes (39 genomic regions) related to immunosuppression have been analysed using a gene-set approach in 1539 melanoma cases and 3917 controls from the GenoMEL consortium GWA study. The association between melanoma susceptibility and the whole set of tumour-immunosuppression genes, and also predefined functional subgroups of genes, was considered. The analysis was based on a measure formed by summing the evidence from the most significant SNP in each gene, and significance was evaluated empirically by case-control label permutation. An association was found between melanoma and the complete set of genes (pemp = 0.002), as well as the subgroups related to the generation of tolerogenic dendritic cells (pemp = 0.006) and secretion of suppressive factors (pemp = 0.0004), thus providing preliminary evidence of involvement of tumour-immunosuppression gene polymorphisms in melanoma susceptibility. The analysis was repeated on a second phase of the GenoMEL study, which showed no evidence of an association. As one of the first attempts to replicate a pathway-level association, our results suggest that low power and heterogeneity may present challenges