No abstract

Background Ubiquitous, smart technology has the potential to assist humans in numerous ways, including with health and social care. COVID-19 has notably hastened the move to remotely delivering many health services. A variety of stakeholders are involved in the process of developing technology. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is conducted in people’s homes. Researchers must observe prima facie ethical obligations linked to participants’ interests in having their autonomy and privacy respected. Objective This study aims to explore the ethical considerations around consent, privacy, anonymization, and data sharing with participants involved in SPHERE (Sensor Platform for Healthcare in a Residential Environment), a project for developing smart technology for monitoring health behaviors at home. Participants’ unique insights from being part of this unusual experiment offer valuable perspectives on how to properly approach informed consent for similar smart home research in the future. Methods Semistructured qualitative interviews were conducted with 7 households (16 individual participants) recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants’ homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive thematic approach. Results Four themes were identified—motivation for participating; transparency, understanding, and consent; privacy, anonymity, and data use; and trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed toward the public good. Participants were satisfied with the consent process despite reporting some difficulties—recalling and understanding the information received, the timing and amount of information provision, and sometimes finding the information to be abstract. Participants were satisfied that privacy was assured and judged that the goals of the research compensated for threats to privacy. Participants trusted SPHERE. The factors that were relevant to developing and maintaining this trust were the trustworthiness of the research team, the provision of necessary information, participants’ control over their participation, and positive prior experiences of research involvement. Conclusions This study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings may have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to the participants who place trust in researchers not only on the basis of this information but also because of their institutional affiliation. This study highlights important ethical implications. Although autonomy matters, trust appears to matter the most. Therefore, researchers should be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research.

Behavioural coding is time-intensive and laborious. Thin slice sampling provides an alternative approach, aiming to alleviate the coding burden. However, little is understood about whether different behaviours coded over thin slices are comparable to those same behaviours over entire interactions. To provide quantitative evidence for the value of thin slice sampling for a variety of behaviours. We used data from three populations of parent-infant interactions: mother-infant dyads from the Grown in Wales (GiW) cohort (n = 31), mother-infant dyads from the Avon Longitudinal Study of Parents and Children (ALSPAC) cohort (n = 14), and father-infant dyads from the ALSPAC cohort (n = 11). Mean infant ages were 13.8, 6.8, and 7.1 months, respectively. Interactions were coded using a comprehensive coding scheme comprised of 11–14 behavioural groups, with each group comprised of 3–13 mutually exclusive behaviours. We calculated frequencies of verbal and non-verbal behaviours, transition matrices (probability of transitioning between behaviours, e.g., from looking at the infant to looking at a distraction) and stationary distributions (long-term proportion of time spent within behavioural states) for 15 thin slices of full, 5-min interactions. Measures drawn from the full sessions were compared to those from 1-, 2-, 3- and 4-min slices. We identified many instances where thin slice sampling (i.e., < 5 min) was an appropriate coding method, although we observed significant variation across different behaviours. We thereby used this information to provide detailed guidance to researchers regarding how long to code for each behaviour depending on their objectives.

Background During the arrival of the COVID-19 pandemic, various professional ethical guidance was issued to (and for) health and social care professionals in England and Wales. Guidance can help to inform and support such professionals and their patients, clients and service users, but a plethora of guidance risked information overload, confusion, and inconsistency. Methods During the early months of the pandemic, we undertook a rapid review, asking: what are the principles adopted by professional ethical guidance in England and Wales for dealing with COVID-19? We undertook thematic content analysis of the 29 documents that met our inclusion criteria. Results The 29 documents captured 13 overlapping principles: respect, fairness, minimising harm, reciprocity, proportionality, flexibility, working together, inclusiveness, communication, transparency, reasonableness, responsibility, and accountability. Conclusions We intend this attempt to collate and outline the prominent principles to be helpful, particularly, for healthcare practice during the COVID-19 pandemic and, hopefully, for future pandemic planning. We also offer some reflections on the guidance and the principles therein. After describing the principles, we reflect on some of the similarities and differences in the guidance, and the challenges associated not only with the specific guidance reviewed, but also with the nature and import of “professional ethical guidance”.

Both maternal and paternal postnatal depression (PND) are associated with increased risk of less optimal offspring developmental outcomes. Early exposure to differences in maternal and paternal vocalisation behaviours that may be associated with maternal and paternal PND, may be important in this relationship. However, little research has captured vocalisation patterns at home without researchers present. This study sought to examine the associations between maternal and paternal PND and various aspects of parental vocalisation behaviours. Mothers (n=104) and fathers (n=34) of six-months old infants from the Avon Longitudinal Study of Parents and Children Generation-2 (ALSPAC-G2) provided video footage of mother- and father-infant interactions filmed at home in an ecologically valid way using head-worn video cameras (head cams) without the need for researchers to be present, with 25 mother-infant and father-infant interactions coded on multiple aspects of parental and infant vocalisation behaviours using the micro-behavioural observational coding system. Parental depression symptoms were measured using the Edinburgh Postnatal Depression Scale (EPDS) and analysed as a continuous score. Frequencies and duration of vocalisation behaviours were similar in mothers and fathers, however, there was an indication that fathers demonstrated higher frequency and duration of commands, exclamations and ironic/sarcastic tone and criticisms compared to mothers, while mothers engaged in more teaching compared to fathers. Linear regression models indicated that maternal and paternal PND were not associated with the majority of vocalisation behaviours, however, there were some specific patterns observed mostly related to the emotional tone of the vocalisations. Higher levels of maternal PND were associated with lower frequency of speech in a neutral tone, frequency and duration of use of humour, and increased duration of speech in a positive tone. Higher levels of paternal PND were associated with higher mean duration of speech, infant-directed speech, higher frequency and duration of laughing, and increased duration of speech using questions and encouragement. These findings extend existing research by investigating the associations between maternal and paternal PND and a wide range of vocalisation behaviours captured and coded using innovative methods and in a more ecologically valid way than previous studies. Many of the associations between parental PND and vocalisations did not support hypotheses suggested by existing literature, which may reflect the changing nature of contemporary parenting practices in the context of PND, improved ecological validity or methodological limitations of the study, including the explorative nature and multiple statistical comparisons. However, if replicated, the pattern of findings could suggest that depression in parents can be associated with more emotionally sensitive behaviours, particularly in fathers (such as higher duration of positive tone, encouragement and infant-directed speech), but also those potentially indicating lower parenting confidence (such as higher duration of questions and reduced use of neutral tone).

Research integrity is fundamental to the validity and reliability of scientific findings, and for ethical conduct of research. As part of PRINTEGER (Promoting Integrity as an Integral Dimension of Excellence in Research), this study explores the views of researchers, research managers, administrators, and governance advisors in Estonia, Italy, Norway and UK, focusing specifically on their understanding of institutional and organisational influences on research integrity.A total of 16 focus groups were conducted. Thematic analysis of the data revealed that competition is pervasive and appeared in most themes relating to integrity. The structural frameworks for research such as funding, evaluation and publication were thought to both protect and, more commonly, undermine integrity. In addition, institutional systems, including workload and research governance, shaped participants’ day-to-day work environment, also affecting research integrity. Participants also provided ideas for promoting research integrity, including training, and creating conditions that would be supportive of research integrity.These findings support a shift away from individual blame and towards the need for structural and institutional changes, including organisations in the wider research environment, for example funding bodies and publishing companies.

BACKGROUND <i>Ubiquitous</i>, <i>smart</i> technology has the potential to assist humans in numerous ways, including with health and social care. COVID-19 has notably hastened the move to remotely delivering many health services. A variety of stakeholders are involved in the process of developing technology. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is conducted in people’s homes. Researchers must observe prima facie ethical obligations linked to participants’ interests in having their autonomy and privacy respected. OBJECTIVE This study aims to explore the ethical considerations around consent, privacy, anonymization, and data sharing with participants involved in SPHERE (Sensor Platform for Healthcare in a Residential Environment), a project for developing smart technology for monitoring health behaviors at home. Participants’ unique insights from being part of this unusual experiment offer valuable perspectives on how to properly approach informed consent for similar smart home research in the future. METHODS Semistructured qualitative interviews were conducted with 7 households (16 individual participants) recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants’ homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive thematic approach. RESULTS Four themes were identified—motivation for participating; transparency, understanding, and consent; privacy, anonymity, and data use; and trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed toward the public good. Participants were satisfied with the consent process despite reporting some difficulties—recalling and understanding the information received, the timing and amount of information provision, and sometimes finding the information to be abstract. Participants were satisfied that privacy was assured and judged that the goals of the research compensated for threats to privacy. Participants trusted SPHERE. The factors that were relevant to developing and maintaining this trust were the trustworthiness of the research team, the provision of necessary information, participants’ control over their participation, and positive prior experiences of research involvement. CONCLUSIONS This study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings may have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to the participants who place trust in researchers not only on the basis of this information but also because of their institutional affiliation. This study highlights important ethical implications. Although autonomy matters, trust appears to matter the most. Therefore, researchers should be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research.

BackgroundBoth maternal and paternal postnatal depression (PND) are associated with increased risk of less optimal offspring developmental outcomes. Early exposure to differences in maternal and paternal vocalisation behaviours associated with maternal and paternal PND may be important in this relationship. However, little research has captured vocalisation patterns at home without researchers present.ObjectivesThis study sought to examine the associations between maternal and paternal PND and various aspects of parental vocalisation behaviours.MethodsMothers (n = 104) and fathers (n = 34) of six-months old infants from the Avon Longitudinal Study of Parents and Children Generation-2 (ALSPAC-G2) provided video footage of mother- and father-infant interactions filmed at home using the head-worn video cameras (headcams) without the need for researchers to be present. Twenty-five mother-infant and father-infant interactions were coded on multiple aspects of parental and infant vocalisation behaviours using the micro-behavioural observational coding system. Parental (PND) was measured using the Edinburgh Postnatal Depression Scale (EPDS; total score).ResultsFrequencies and duration of vocalisation behaviours were similar in mothers and fathers. However, there was an indication that fathers demonstrated higher frequency and duration of commands, exclamations and ironic/sarcastic tone, and criticisms compared to mothers, while mothers engaged in more teaching compared to fathers. Linear regression models indicated that maternal and paternal PND were not associated with the majority of vocalisation behaviours. However, there were some specific patterns observed, mostly related to the emotional tone of the vocalisations. Higher levels of maternal PND were associated with lower frequency of speech in a neutral tone, frequency and duration of use of humour, and increased duration of speech in a positive tone. Higher levels of paternal PND were associated with higher mean duration of speech, infant-directed speech, higher frequency and duration of laughing, and increased duration of speech using questions and encouragement.ConclusionThese findings extend existing research by investigating the associations between maternal and paternal PND and a wide range of vocalisation behaviours captured and coded using innovative methods and in a more ecologically valid way than previous studies.