While current literature evidences a strong association between gender-based violence exposure and adverse mental health outcomes, few studies have explored how attitudinal acceptance of intimate partner violence (IPV) might impact this relationship. This analysis employed data from 13–24-year-old females as part of the Violence Against Children Surveys in Nigeria, Uganda, and Malawi. Mental health status, defined by the Kessler Screening Scale for Psychological Distress, and suicide ideation served as outcome measures. Predictors of interest included lifetime experiences of IPV and attitudinal acceptance of IPV. Country-stratified logistic and ordinary least squares regressions were used to predict outcomes and included interactions between violence exposure and attitudinal acceptance of IPV. Violence exposure was associated with increased symptoms of mental distress and increased suicide ideation in all countries. Among those who experienced IPV, exhibiting attitudinal acceptance of IPV was associated with improved mental health in Nigeria and Malawi. IPV tolerance conferred lower odds of suicide ideation following IPV exposure in Nigeria. The findings suggest that programs aiming to reduce attitudinal acceptance of IPV must consider how these changes may interact with women’s exposure to IPV. Gender-based violence (GBV) is a globally pervasive phenomenon that poses exacerbated risks of mental distress, substance use disorder, sexually transmitted infection, and death for women and girls . AccordiAdolescent girls are particularly vulnerable to GBV, their age and social status amplifying power imbalances and further limiting their autonomy ,2,3,5,6.Researchers posit that a state of “mental defeat,” caused by abject loss of autonomy and personal power, and sentiments of self-isolation subsequent to trauma may be responsible for increased mental health symptoms . AccordiThe literature has also identified a bidirectional relationship between violence victimization and IPV tolerance. IPV tolerance, or attitudinal acceptance of violence, is defined as the belief that physical or emotional violence subjected against a romantic partner can be justified . In a 20While the link between such experiences of IPV and adverse mental health outcomes has received extensive study, the relationship between attitudinal acceptance of IPV and mental health distress is less clear. In its 2017 white paper, the International Center for Research on Women (ICRW) reported the effect of unequal gender norms, and the role conflict they cause in adolescents, on augmenting suicidal behavior risks . FurtherThis analysis employed data from the Violence Against Children Surveys (VACS) conducted in Nigeria (2014), Malawi (2013), and Uganda (2015). The VACS datasets are implemented as part of a partnership between UNICEF, country governments, and the U.S. Centers for Disease Control and Prevention’s (CDC) Division of Violence Prevention, among other bilateral and multilateral organizations, and aim to estimate the scope, determinants and impacts of violence against children and adolescents. The VACS utilize a multi-stage sampling design and samples are selected to be representative of 13–24-year-old males and females in each country at the national level . In ordeGender-matched surveys—whereby male and female respondents were interviewed by male and female interviewers, respectively—for the three VACS included in this analysis were administered in-person. Survey questionnaires included questions on basic demographics; experiences of physical, sexual, and emotional violence; service access and utilization; and mental and sexual health, among other topics. Caregivers’ informed consent was obtained for participants under 18, and informed consent and assent were obtained directly from participants 18 and over and under 18, respectively. All interviews took place in a private space and did not involve the collection of any identifying information in order to protect respondents’ privacy and ensure confidentiality. All study protocols were approved by the CDC and in-country institutional review boards.This analysis included two mental health outcomes of interest: suicide ideation and the Kessler 6 scale (K6). Suicide ideation was operationalized as a dichotomous outcome using the question, “Have you ever thought about killing yourself?” The K6 can be used to measure nonspecific distress and has been previously validated in adolescent populations ,31. The The analysis also employs two predictors of interest. IPV victimization is operationalized in the binary and signals whether a respondent has ever experienced physical IPV by a current or former partner. A dichotomous measure of attitudinal acceptance of IPV is generated from five questions capturing whether a respondent believes it is acceptable for a husband to beat his wife in each of five scenarios: the wife goes out without telling her husband, does not take care of her children, argues with him, refuses to have sex with him, or burns the food. Respondents receive a “1” if they agree that IPV is an acceptable response in at least one scenario, and a “0” otherwise.Control variables included in the regression analyses were selected according to the existing literature and the VACS questionnaires, and include age, a dichotomous variable signaling whether the respondent had ever attended school, a dichotomous variable signaling whether the respondent is married or living with someone as if married, and a dichotomous variable indicating whether the respondent has worked for pay in the past 12 months ,33,34.All measures were first summarized to assess descriptive statistics within each country. Multivariate logistic and ordinary least square (OLS) regressions were used to estimate the relationships between the predictors of interest and suicide ideation and the K6 scale, respectively. In order to examine whether attitudinal acceptance of IPV modifies the relationship between violence victimization and mental health outcomes, an interaction term between attitudinal acceptance of IPV and violence exposure was included in the models. The regression analyses were stratified by country and all models controlled for age, ever school attendance, ever being married, and working for pay in the past 12 months. Observations were weighted to be representative of 13–24-year-old females in each of the three countries, and standard errors were adjusted to account for the multi-stage sampling design. All analyses were carried out using Stata14.p = 0.001) and 4.36  greater odds of suicide ideation, respectively.p = 0.01) and Malawi  as measured by the Kessler 6 scale. IPV survivors who exhibited attitudinal acceptance of IPV also had significantly lower odds  of reporting suicide ideation compared to their peers who did not accept IPV.Attitudinal acceptance of IPV was not found to be associated with either mental health outcome in any of the countries. However, results showed that among respondents who had experienced IPV, those who expressed attitudinal acceptance of IPV had significantly greater mental health in Nigeria  to evaluate and address the consequences of the cognitive dissonance that may result for women and girls who continue to experience IPV. Programs can work with survivors to identify emotion-focused coping behaviors, involving minimization, rationalization, and denial, and discuss how such strategies shape the cognitive appraisal frameworks prompting IPV tolerance in their relationships . SubsequIt is of note that significant improvement in mental health status and reduction in odds of suicide ideation for IPV-tolerant IPV survivors was only observed in the Nigerian and Malawian cohort. The lack of similar findings in Uganda suggests a need to further explore this dynamic in other sub-Saharan African countries and LMICs internationally. Replication of our findings in other cohorts, accompanied by improved characterization of context-specific sociocultural factors and respondent demographics, may provide insight for future identification of settings requiring mental health-sensitive modifications to GBV interventional approaches. Such examination could also aid in elucidating context-specific elements mitigating the role of IPV tolerance and cognitive dissonance in survivors’ mental health presentation in Uganda, providing novel targets for GBV program design.Consideration of findings from this analysis should take into account the following limitations. First, the VACS are self-reported questionnaires, and thus measures of sensitive items such as suicide ideation and violence exposure may be susceptible to disclosure bias ,26,27. SAttitudinal acceptance of IPV is associated with worsened depressive symptoms amongst IPV survivors, yet may provide an emotion-focused coping mechanism to assuage the cognitive dissonance experienced by survivors. Assessing respondents’ coping strategies, and risks of mental health distress posed by interventions, is critical for mitigating potential unintended consequences of IPV interventions and ensuring the long-term success of programs. Our research demonstrates a context-specific, mediating role for IPV tolerance in promoting improved mental health status and reduced suicide ideation in IPV-exposed adolescent girls. The analysis thus highlights the importance of a nuanced approach to IPV interventions to reduce symptoms of mental health distress in survivors through the targeting of context-specific sociocultural factors and norms.


The combination of primary and secondary prevention has already influenced the colposcopic practice by reduction in HPV (human papillomavirus) vaccine-type HSIL (HIGH-GRADE SIL), colposcopy referral numbers, colposcopic positive predictive value (PPV) for CIN2+, and by modification of referral pattern, colposcopic performance, and procedures. Different strategies, both isolated and combined, have been proposed in order to maintain the diagnostic accuracy of colposcopy: patient risk stratification based on immediate or future risk of CIN3+ or on HPV genotyping after a positive screening test. Data are needed to support alternative colposcopic strategies based on vaccination status and on the application of artificial intelligence where the patient’s risk stratification is implicit in precision medicine which involves the transition from an operator-dependent morphology-based to a less-operator dependent, more biomolecular management. The patient’s risk stratification based on any combination of “history” and “test results” to decrease colposcopy workload further reduce colposcopic and histologic morphological approaches, while adding genotyping to the risk stratification paradigm means less cytologic morphologic diagnosis. In Italy, there is a strong colposcopic tradition and there is currently no immediate need to reduce the number of colposcopies. Instead, there is a need for more accredited colposcopists to maintain the diagnostic accuracy of colposcopy in the vaccination era. The World Health Organization (WHO) has called for global action towards the elimination of cervical cancer by 2030 until it becomes a rare tumor ,2. This Box 1HPV vaccines are prophylactic;population coverage is not yet as expected (95%);vaccines do not protect against all HPV types that cause precancer and cancer, although the nine genotypes covered account for 90% of cancers;duration of vaccine protection and long-term efficacy is not known, but at least 12 years has already been demonstrated and lifetime protection assumed;vaccination effectiveness seems to be related to the interval of time between the first vaccination and the screening program. Younger age at immunization is associated with increasing vaccine effectiveness.The interval of time between vaccination and screening should be considered in future screening and follow-up algorithms, as it is notable that the HPV vaccine effectiveness increases with increasing intervals between first vaccination and earliest detection test . The effThe demand for colposcopy services is influenced by a number of factors, first of all, by the referral criteria as a result of the target screening population and the primary screening test used.cohorts not offered vaccination;vaccinated girls and women with different vaccine and at different age;unvaccinated girls and women within vaccinated cohorts (at different ages and with different vaccines);vaccinated cohorts in whom it is not known who has and has not been vaccinated and with which vaccine.women vaccinated across or after treatment for HSIL with an adjuvant intent.Different target screening populations characterized by a different vaccination status are commonly referred to as colposcopy in the present era ,15,16 B:cohorts Box 2Screening population:-Different vaccination status of the population;-different age cohorts in vaccinated and screened population;-different timing between vaccination and screening test;-different vaccine effectiveness;Primary screening test:-Different primary screening tests according to target population age and vaccination status;-HR HPV partial genotyping as the primary screening test is used to refer only the highest risk group HPV 16/18 positive to direct colposcopy;-HR HPV extended genotyping as an additional or primary screening test repre-sents; an essential step of HPV-risk estimation even if the additional risk strati-fication needs further evidence.Obviously, such a diversity of the screening populations does not facilitate a univocal approach to all the stages of the prevention process, included colposcopy. Indeed, only a universal vaccination strategy will, over time, lead to greater homogeneity of the populations to be screened. In the female population, considering the age of vaccine administration, we can identify at least three vaccinated cohorts: young girls vaccinated at 12 years or earlier, catch-up vaccination within 25 years, and vaccination after 25 years. Before several cohorts are intensively vaccinated, discrimination of screening protocols as a function of the vaccination status of the individuals may appear to be the possible strategy in most settings. In fact, the “HPV vaccination status”, which has not yet been included in the recent clinical guidelines, will undoubtedly affect recommendations and guidelines about the management of positive screening tests . At the When we consider the primary screening test, we are aware that we will deal, for some time, with women screened in different ways: only by primary cytology, by HR HPV test and triage cytology, by co-testing, and, in some settings, even by partial or extended genotyping.Based on scientific evidence as well as national and international guidelines, organized screening programs in Italy have gradually introduced the HPV test as the primary screening test, replacing cytology in older women ,19. As iIn settings where co-testing is used as a primary screening tool, the modifications of recommendations have recently been proposed: the ASCCP published new management guidelines for cervical cancer screening abnormalities, where paradigm shifts were proposed from result-based to risk-based guidelines . ClearlyBefore the vaccination era, for around one century, colposcopy was performed right away in patients with abnormal cytology. The transition from Pap smear to HPV primary screening test already led to a decreasing trend in the number of referrals to colposcopy. New screening guidelines recommend colposcopy only when lesions are more likely to be detected . Though Box 3Reduced the prevalence of HPV 16 (and other vaccine HPV types) infection and HPV 16 CIN2+;reduced the PPV of colposcopy for the detection of CIN2+;does not have a significant effect on commonly recognized colposcopic features; multiple, as opposed to single HR HPV infection, is associated with larger colposcopic lesions;modified pattern of referral to colposcopy: the proportion of LSIL increase, the proportion of HSIL decrease and therefore the number of referrals to colposcopy for HSIL decrease;modified colposcopic performance  thus diagnostic and therapeutic procedures require major knowledge and skills;new screening guidelines recommend colposcopy only when lesions will likely be detected;modifications of colposcopic standards are required (more or less than 50 colposcopies/year for HSIL);higher-quality colposcopy service represents an essential component of future cervical cancer screening programs;new guidelines are moving from more operator-dependent morphology-based screening and diagnosis to less operator-dependent biomolecular management.HPV vaccination:p < 0.001), and found no evidence of type-replacement ;increase in the proportion of women having no clinical interventions (biopsy or treatment);decrease in the proportion of women with a high-grade CIN colposcopic impression;decrease in the proportion having diagnostic punch biopsy/biopsies or treatment (loop excision or cold coagulation) .(A)Risk stratification based on age (</≥25), vaccination status, current test results, and history of previous screening test and colposcopy/biopsy results and expressed in a percentage ranging from 0.15 to 100%;(B)risk groups based on the positivity of the single HR HPV genotype found adding partial or extensive genotyping to all positive HR HPV screening test cases;(C)combination of A + B.In this context, and with this evidence, what could and should be done to maintain a good diagnostic accuracy of colposcopy in the vaccination era? First of all, further reduction in the inter- and intra-observer variability of the colposcopic practice including a less subjective and more objective patient selection. Artificial intelligence represents a promising tool that could help in obtaining needed standardization. Patient selection could be based on immediate or future risk of HSIL+ (CIN3+) stratification after a positive screening in different ways, as has recently been proposed by the ASCCP new guidelines  Figure :(A)Risk In settings like Italy, the applicability of the aforementioned guidelines and proposals is however premature and should, in any case, be preceded by adequate clinical validation and by adaptation of the risk stratification process to the Italian population and careful consideration of the possible legal consequences that could be derived from it. What would it mean to apply risk stratification to current Italian screening that is based on cytology or HR HPV test according to age? An application is already available online to calculate the risk of CIN3+ for each patient and at each visit on a tablet or smartphone. How could this new approach change by adding extended HPV genotyping? In screened women with less than 30 years with ASC-US or LSIL Pap smear would it mean adding a full genotyping to all, then referring directly to colposcopy only those positive for higher risk for CIN3+ HPV  or even those positive for 33, 45, 52, and 58? Currently, in young Italian cohorts, the HPV test is not used as a screening test. On the other hand, after the age of 30, all women positive for HR HPV screening test would be subjected to full genotyping, those positive at 16, 18, and 31 referred directly to colposcopy, those positive for another 11 HR HPV to cytology. Of those, the HSIL cytologies would clearly need direct colposcopy. Even cytologies ASC-US/LSIL positive for 33, 45, 52, and 58 HPVs would be referred to colposcopy, while other low-grade cytologies positive for 35, 39, 51, 56, 59, 66, and 68 would go to control after 1 year such as negative cytologies. However, we are aware that any change to the current protocols would take time, validation through scientific data, and discussion within accredited societies. We are also convinced that this policy would indeed mean not only a big change in colposcopy practice, first of all in follow-up timing modifications and delayed referral to colposcopy for ASC-US/LSIL cases positive for lowest risk HPV group genotypes , but also less costs and less patient anxiety. A stratification of each patient’s own risk of CIN3+ at screening could help towards tailored management ,22,23,24The strategies of cervical carcinoma prevention are continuously changing even with differences in the modalities and timing between the various real-world scenarios. At the moment, the synergy between primary and secondary screening is strong and is obtaining satisfactory results. There is a need for innovative approaches to cervical cancer eradication and, in this context, current efforts are focused on the continuous search for new or better screening tests and for maximum vaccination effectiveness. The Italian Society of Colposcopy and Cervico-Vaginal Pathology (SICPCV) is committed to supporting vaccination programs for children, adolescents, young adults, and post-treatment for HSIL together with a catch-up vaccination ,63,64. IBox 4Colposcopic practice is changing in the HPV vaccination era;high-quality colposcopy service remains an essential component of future cervical cancer screening programs;the colposcopist remains the clinical manager;colposcopic guidelines are moving towards patient risk stratification;risk stratification process will gradually include other factors  such as vaccination status, patient’s immune health status, microbiota vaginotype, genetic and epigenetic factors available in clinical evaluation, etc.;the reduction in colposcopic PPV is a point of concern; colposcopy will increasingly become an expert investigation;future strategies to maintain and increase expertise and informational role of colposcopy;the role of national and international Societies of colposcopy remains fundamental; national societies of colposopy should provide continuous, updated, available, and mandatory accreditation to all colposcopic professionals;application of artificial intelligence models to colposcopic practice to improve diagnostic accuracy can be the future.


Studies of creativity emerging from cultural psychology and social psychology perspectives challenge individualist conceptions of creativity to argue that social interaction, communication, and collaboration are key elements in creativity. In recent work creative collaboration has been proposed to be “distributed” between audiences, materials, embodied actions, and the historico-socio-cultural affordances of the creative activity and environment, thus expanding the potentialities of creative collaboration beyond instances of direct human interaction and engagement. Music performance, improvisation and composition may be viewed as exemplary “laboratories” of creative collaboration through the combined elements of audiences, materials, embodied actions and historico-socio-cultural affordances and constraints. This article reports the findings of a systematic literature review of creative collaboration and collaborative creativity in music. We sought to identify what has been currently investigated in relation to these terms and concepts in music, with what methodologies and in what settings. Findings indicate that studies were undertaken in higher education, professional development and professional practice predominantly, leading to an emergent phenomenon of interest, collaborative creative learning. Musical genres were jazz, popular, western classical, contemporary and world musics across the musical processes of composing, improvising and performing. Studies in higher education and professional development settings focused on identifying those practices that supported learning rather than the nature of collaborative creative approaches or the outcomes of creative collaboration. Participants were primarily male, with small sample sizes. Methodologies were largely qualitative with an emphasis on case study using observation, interview and reflective diary methods. Further areas for research include: the investigation of gendered approaches to creative collaboration, collaborative creativity, and collaborative creative learning; the use of more diverse research methodologies and methods and techniques including large-scale quantitative studies and arts-based and arts-led approaches; and the investigation of more diverse music settings. Creative Collaboration published in 2000 identifies a number of contributing factors for the turn from an individualist Western focus on the solitary creative genius to a social constructivist view of creativity. These factors include the waning of Piagetian views of learning and development in the second half of the 20th century as Vygotsky's writings from the 1920–1930s Soviet era became known in the English-speaking world through translation . Collaboration thus “…provides a mutual zone of proximal development where participants can increase their repertory of cognitive and emotional expression” (p. 187). John-Steiner presents a model of creative collaboration which identifies four patterns of collaboration: distributed, complementary, family, and integrative. Distributed collaboration is that which occurs in shared thought communities, or loose networks of collaborative groups, where ideas and practices may be shared and appropriated for individual as well as for collective ends. Complementary collaborations rest in the recognition and instrumentalization of complementary expertise, disciplinary knowledge, roles and temperaments to pursue a common goal (2000). Family collaborations, whilst nested in the notion of familial relationships , focus on the ways in which relationships, roles and responsibilities may shift between members over time and between tasks. Importantly, these collaborations rely on a heightened sense of mutual obligation, shared companionship, and belonging, as well as a capacity to survive or manage productively the tensions, conflicts, and disagreements that might arise through collaborative work. John-Steiner's fourth pattern of collaboration, integrative collaboration is created in and built upon joint endeavors to effect “transformative change.” She emphasizes that these four patterns of creative collaboration are not hierarchical; rather, they serve different ends in producing creative work.John-Steiner's focus was on intellectual and artistic collaboration as evidenced in long-standing creative partnerships. Drawing on Howard Becker's notion of “art worlds” Becker, , she ideWhilst early investigations of creative collaboration emphasized the role of social interaction in creative collaboration . He writes of the “compelled cooperation” of teams, whether “direct or indirect” , illustrating the work of collaborative creative teams in music through reference to the work of GRM  and IRCAM (Institute de Recherche et Coordination Acoustique/Musique). This work is described as respectively “cooperation” between several composers, between tool developers and composers, and, between musical assistants and composers. Whilst the focus here is on composer-focused collaborative creativity, others recognize the roles of performers including performers and conductors Ravet, , performWe suggest that music performance, improvisation and composition may be viewed as exemplary “laboratories” of creative collaboration and/or collaborative creativity through the historico-socio-cultural affordances (or constraints) they offer and the combined elements of audiences, materials, embodied actions and the collaborative teams that are involved . It is notable that the research “laboratories” cited above have focused largely on “eminence” settings  How and in what eminence music settings has creative collaboration or collaborative creativity been investigated?(2) What problems and research questions have been the focus of research in those settings?(3) How are creative collaboration and/or collaborative creativity described, defined and framed in eminence music settings?(4) What are the practical implications of research concerned with creative collaboration and/or collaborative creativity in eminence music settings?Our approach to conducting the systematic literature review was guided by the PRISMA  checklist .Line 1—.Line 2—(creative* or apprentice* or leader* or mentor* or guid* or teach* or learn* or practice or master*).Line 3—(pedagogLine 4—(music).Three data bases  were searched using the combined keywords of the search protocol, in English, published between 1990 and 2021, searching under Topic/All fields for peer-reviewed journal articles with output by relevance. Parameters were set in order to limit the results to papers published in English as the shared language of all team members; published since 1990 because exploratory screening had identified no publications before 1990 and only a handful of papers in the 1990s, and with a cut-off at 2021 as the date when this research was carried out; searching under “Topic (Web of Science)/All fields (JSTOR)/Search anywhere (ERIC)” was adopted when an “Abstract” search resulted in zero outputs in some data bases; book chapters were eliminated from the search as these frequently synthesize existing literature rather than report on new research, with peer-reviewed articles typically undergoing a more stringent peer review process.The search identified 6,347 items and after the first screening and removal of duplicates, 138 items were deemed relevant according to the first screening criteria.First screening criteria:In English;Published between 1990 and 2021;Peer-reviewed journal articles;Context of music;Creativity and/or collaboration as either key concept.Abstracts of the 138 retained articles were screened by one team member and main points summarised under the following topic areas: composition , teacher education/higher education/professionals, theoretical papers, inter-disciplinary papers, jazz/popular music, brain studies, community music, and improvisation. Papers concerned with primary or secondary school contexts were excluded (n = 26) due to our focus on eminence settings, leaving 112 papers see .The full team (three researchers) screened the 112 retained papers (titles and abstracts only) independently and after discussion 57 papers were excluded according to the following criteria for retention:Context: Professional training and practice in music performance, improvisation and composition, where “creative collaboration” or “collaborative creativity” is a primary focusPeer-reviewed journal articleIn EnglishEmpirical studyBoth key concepts of creativity and collaboration are the focus of studyPapers were excluded at this stage if all three team members agreed. Papers where there was disagreement were retained at this stage.An analysis of the full texts of the remaining 55 articles was carried out. The articles were read by the researchers and coded using the SPIDER tool developed by Cooke et al.  see Tab. The orin = 5) were retained for the Background section and only empirical papers were considered for full-text analyses (n = 23)  see .Twenty-three papers were retained for analysis, while 32 were excluded. Five of these papers informed the theoretical background to the systematic review but were not included in the analysis as they were not empirical papers. Reasons for exclusion from analysis were: exclusive focus on one concept (either creativity or collaboration) rather than the combined concept (creative collaboration or collaborative creativity) and non-empirical papers.Publication years ranged from 2006 to 2020. Seven studies were carried out in Australia and six studies were carried out in the UK. A further three studies were undertaken in the USA and one in Canada. Six studies were undertaken in European countries: Italy (two studies), Denmark, Finland, Ireland and Spain, and one in Singapore .As noted above the analysis was guided by the PRISMA checklist , improvisation (four studies), composition (two studies) and recording studio practice (one study). Fourteen studies were carried out in professional music contexts, with eight of those concerned with an analysis of professional practice and five focused on processes associated with professional development. Among the professional development studies, two focused on developing expertise in improvisation, two focused on composition and one was undertaken in the context of recording studio practice. Finally, two further studies took place in community settings, where the focus was on improvisation .Twenty-two of the 23 studies reported their sample size, and overall, this ranged from 1 to 64, with a mean sample size of 13.86. Just seven studies reported the ages of their participants, which overall ranged from 17 to 55. The mean participant age range among those seven studies was 27–39. Fourteen studies reported that their research included male participants, while 10 of those 14 studies also included female participants. Overall, of the 14 studies that reported the sex of their participants, a total of 72 males were included in the research compared with 32 females.Among the studies concerned with professional development, Biasutti , 2018 usStudies of professional practice differed from those exploring professional development through their emphasis on understanding the nature of creative collaborative processes rather than on the practices that supported learning. For example, Hill and Fitzgerald  adopted Morgan et al.  investigAmong the studies in higher education, seven were carried out with undergraduate students, while just one was carried out in a Doctoral Studies program, focusing on recording studio practice.Within higher education, van Nort  carried Collaborative learning within intensive workshops has been explored. For example, situated and collaborative learning experienced within jazz and popular music conservatoire performance workshops was investigated by Virkkula . Using aOne-to-one contexts have also been the focus of research concerned with collaborative creativity and collaborative creative learning, in higher education. For example, learning and teaching in creative composition, occurring within one-to-one dyads have been explored Barrett,  using inFinally, two studies were carried out in community contexts. In the first Kenny, , the resEighteen of the retained studies were designed within a qualitative paradigm, including ethnography (1), case study (11), qualitative exploratory (2), practice-based artistic research (2), and phenomenological studies (2). Two studies were classified as quantitative, and three used mixed methods .Among the 23 retained studies, the most frequently used method was semi-structured interview (15 studies), followed by observations (11 studies). In addition, data were gathered through participant observation (five studies), journal reflections (four studies), and audio recordings (four studies). Finally, questionnaires and focus groups were each used in two studies, while computer code analysis was used in one study. Across all of the settings, the methods used were primarily qualitative, with the exception of one self-report rating scale questionnaire  and inter-dependence among musicians (each musician takes into account information about concurrent voices to shape their expression)”  and professional development (5) settings in which the bulk of the studies were located. Those studies investigating collaborative creative learning focused largely on strategies for scaffolding new knowledge in situated learning settings casting the teacher variously as collaborator, guide, coach, mentor. Further research is needed to understand the relationships between the positioning of these roles and the levels of experience, skills and expertise manifest in the teaching-learning interaction. Further investigation is also warranted in understanding the ways in which peer-to-peer learning is facilitated in creative collaboration and collaborative creative music learning settings.Emergent inter and intra-personal issues highlighted the elements of disruption, conflict, and pace as components of creative collaboration and collaborative creativity, suggesting that these are perhaps necessary intersecting points in the development of collaborative work. The identification of these elements returns us to John-Steiner's four patterns of creative collaboration: distributed, complementary, family, and, integrative. None of the studies included in this systematic literature review could be classified as a family collaboration in terms of a familial connection as described by John-Steiner. A small number of those studies undertaken in professional settings (e.g., Khodyakov, Through this systematic literature review of creative collaboration and collaborative creativity in the music laboratories of performance, improvisation and composition we have sought to interrogate the ways in which these concepts have been theorized and implemented. Whilst collaboration might be a long-standing practice in music (Delalande, The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Artificial intelligence (AI) is (re)shaping strategy, activities, interactions, and relationships in business and specifically in marketing. The drawback of the substantial opportunities AI systems and applications (will) provide in marketing are ethical controversies. Building on the literature on AI ethics, the authors systematically scrutinize the ethical challenges of deploying AI in marketing from a multi-stakeholder perspective. By revealing interdependencies and tensions between ethical principles, the authors shed light on the applicability of a purely principled, deontological approach to AI ethics in marketing. To reconcile some of these tensions and account for the AI-for-social-good perspective, the authors make suggestions of how AI in marketing can be leveraged to promote societal and environmental well-being. Artificial intelligence (AI) is not just a technology but a powerful force reshaping and benefiting societies by reducing costs and risks, increasing consistency and reliability, and providing new solutions to complex problems  and prevent any harm —the call for and stance of AI for  good  as enabling ethical principle. Moreover, ethical challenges and interdependencies are likely to intensify with increasing levels of intelligence and humanization of AI. To still harness and not miss opportunities provided by AI in marketing, the prevailing principled, deontological approach to AI ethics should be supplemented by a utilitarian perspective weighing benefits and costs across stakeholders. Second, we provide insights of how AI in marketing can be leveraged to promote social and environmental well-being and thus to reconcile the ethical principles of beneficence and non-maleficence. Our suggestions add knowledge to the scholarly work on AI for social good and sustainable consumption and marketing. The AI-for-social-good perspective stresses that AI-based solutions have the potential to tackle societal problems  and AI ethics . This search procedure and screening of abstracts and titles lead to the selection of 300 potentially eligible articles (148 for AI in marketing and 152 for AI ethics), which were then reviewed in more detail. The systematic examination of the literatures on AI ethics and AI in marketing allows us to identity the focal areas of application of AI in marketing and to map the most relevant and appropriate ethical principles related to AI. Both are then synthesized to inform our conceptual analysis of the ethical concerns of AI in marketing from a multi-stakeholder perspective.To identify relevant scholarly work on AI ethics and AI in marketing, we conducted a systematic search of published papers. First, we performed a keyword search of electronic databases  using the following keywords: “ethic*,” “guidelines,” “principles,” “framework,” (for AI ethics) and “marketing,” “service,” “retailing,” “consumer,” “customer,” (for AI in marketing) each in combination with “artificial intelligence,” “AI,” “artificial,” “machine learning,” “algorithm*,” “robot*.” Second, we searched review and seminal articles in both fields , segmentation (marketing strategy), and standardization (marketing action).Thinking AI for market analysis (marketing research), targeting (marketing strategy), and personalization (marketing action).Feeling AI for customer understanding (marketing research), positioning (marketing strategy), and relationization (marketing action).To specify and systematize the opportunities of deploying AI in marketing, Huang and Rust  developeDavenport et al.  also proThat is, AI systems that are humanized or emotionally intelligent do not come without ethical controversies , non-maleficence (referenced in 60 documents), responsibility (referenced in 60 documents), and privacy (referenced in 47 documents).In a comprehensive review, Jobin and et al.  content-transparency could be partly explained by the reasoning that “is not an ethical principle in itself but a proethical condition for enabling or impairing other ethical practices or principles”, as suggested earlier by Turilli and Floridi  good  and deliberately (misuse) caused  means intelligibility, that is, how AI works , and accountability, that is, who is responsible for the way AI works . It complements and enables the preceding four principles. In other words, understanding of the functionalities  and responsibilities  informs evaluations of and judgments of the other principles by facilitating understanding if and how AI benefits or harms individuals and society , anticipating AI systems’ predictions to decide about human and AI agency (autonomy) and ensuring accountability in case of failures or biases (justice)  gains in importance against the backdrop of the black box nature and opacity of AI systems and applications  and practice (how). Hence, applied AI ethics are in demand , non-maleficence (avoiding harm and risks), dignity, and privacy  if they would be aware of these indirect social influences by understanding recommender systems’ underlying processes and functionalities . However, black box AI can be an obstacle to such an understanding.In sum, both companies and customers can gain from personalized recommendations, products, services, persuasive appeals, and marketing mix in general. These supply- and demand-side benefits result from better addressing and serving customers’ cognitive and affective needs and preferences on the one hand and resource efficiency  on the other hand. Thus, beneficence of these AI applications can be questioned on the societal and environmental level.Potential irreconcilability of what is deemed good for individuals  and what goodness means on a superordinate level  tends also to arise in the case of AI applications in marketing. That is, the unconditional 2 emissions annually  to over 92 million tons of textiles waste per year  per dollar of gross merchandise sales in 2019  level  strategy to maximize individual utility by satisfying preferences. Conversely, AI systems’ exploratory recommendations of new alternatives  might be the strategy with greatest expected utilities on a societal level  but can impair it . In contrast, these ethical judgments do not coincide on the company and customer levels. That means, AI applications could be beneficent and maleficent at the same time  and by increasing market share concentration for popular products .autonomy and justice principles. Eventually, companies should be responsible for the AI systems they develop and deploy and obliged to deal with the respective ethical implications or challenges.For customers, simple explanations of how AI works  might be more effective and satisfying than complicated ones causing information overload, irritation, and frustration Rai, . In lighConcepts remedying the black box issue of AI are not undisputed. For instance, transparency can interfere with privacy concerns and proprietary boundaries aiming at facilitating exclusivity or competitive advantages. Furthermore, transparency can be subject to cognitive , technical , and temporal restrictions   which increases company sales (company benefit), but also raises the aggregate consumption level, which harms the environment and society at large . Furthermore, the benefits of personalization for both customers and companies  can be compromised by privacy and data protection issues , but so do the issues related to explicability . Ethical challenges in respect to justice and autonomy can increase, but do not necessarily have to. For instance, AI could serve as discrimination detectors  and demand-side factors  in respect to ethical and sustainable consumption. For instance, price, product, and sustainability attributes are differentially valued in dependence of consumers’ self-other orientations , but marketers are also obliged to avoid misuse of psychological targeting and corresponding harm to individuals . Therefore, marketers should avoid targeting vulnerable groups or consumers who are prone to addictive and compulsive behaviors  and unfair  outcomes that undermine the beneficent purpose of AI applications, marketers should gain a certain understanding of data inputs  and AI functionalities . Marketers’ awareness of potentially biased data or AI models is a crucial step of this non-trivial task, since they are likely to be held accountable  should be preferred over structural nudges , although the former are less successful than the latter  if AI is misused or fails. It is also dependent on the subjective nature of well-being (and utilities) and eventually on customers’ acceptance and behavioral responses. An embedded ethics approach guiding AI developers of how to translate ethical principles into practice through ethics training and exchange with ethicists  degree of ethical judgment competence for ethically salient contexts, decisions, and customer interactions . Besides, customers have to retain their decisional power and autonomy. In other words, AI-created choice architectures should be free from coercive, deceptive, and paternalistic structures. That might be even more important when it comes to consumption and purchases that are personally relevant or for which humans are deemed more competent than artificial agents  turns out to enable the other ethical principles. Ethical challenges and interdependencies between ethical principles might increase with levels of intelligence and humanization of AI. Thus, a principled, deontological approach to AI ethics, which implies to refrain from AI applications contravening ethical principles, does not account for the complexity of the future AI development and pervasiveness from an ethical perspective. Therefore, we suggest to complement ethical considerations of AI in marketing by a utilitarian perspective balancing benefits and costs.This paper synthesizes the mounting research areas of AI ethics and AI in marketing. By scrutinizing the validity of ethical principles related to AI in the marketing context and across stakeholders, we show that ethical principles interdepend and collide, partly, in dependence of the stakeholders concerned. Particularly, beneficence-inspired view is complemented by cautioning against misuse of AI, particularly, when directed at vulnerable consumers. We hope that some of our suggestions motivate marketing researchers and practitioners to further investigate how the AI-powered promotion of well-being can be refined, advanced, and effectively put into practice.In essence, ethical principles should not pursue the objective of inhibiting actions or  progress; they should rather amplify the scope of action, autonomy, freedom, and self-responsibility (Hagendorff,


Coffea arabica and Coffea canephora). Seventy-three articles were identified that addressed the study's research question including 42 articles on environmental factors, 20 articles on management conditions, and 11 articles on both. While variation was found between studies, findings highlight that coffee quality is vulnerable to changes in light exposure, altitude, water stress, temperature, carbon dioxide, and nutrient management. Both increases as well as decreases were found in secondary metabolites and sensory attributes that determine coffee quality in response to shifts in environmental and management conditions. The most consistent evidence identified through this systematic review includes the following two trends: (1) increased altitude is associated with improved sensory attributes of coffee and; (2) increased light exposure is associated with decreased sensory attributes of coffee. Research gaps were found regarding the effects of shifts in carbon dioxide, water stress, and temperature on the directionality  of coffee quality and how this varies with location, elevation, and management conditions. This systematic review further identified the following research needs: (1) long-term studies that examine the interactive effects of multiple environmental factors and management conditions on coffee quality; (2) studies that examine the interaction between sensory attributes and secondary metabolites that determine coffee quality and; (3) studies on the feasibility of various climate-adaptation strategies for mitigating the effects of climate change on coffee quality. Evidence-based innovations are needed to mitigate climate impacts on coffee quality toward enhanced sustainability and resilience of the coffee sector from farm to cup.Climate change is impacting crop performance and agricultural systems around the world with implications for farmers and consumers. We carried out a systematic review to synthesize evidence regarding the effects of environmental factors associated with climate change and management conditions associated with climate adaptation on the crop quality of a culturally-relevant perennial crop, coffee ( Specifically, the outcome of coffee quality was evaluated based on: (1) primary metabolites ; (2) secondary metabolites  and; (3) sensory attributes .The PICO framework included the following elements: (1) biological population/study unit: coffee  the title or abstract addresses at least one of the close-framed research questions driving the systematic review; (2) the abstract reports on at least one coffee quality parameter (metabolites or sensory attributes).The 1,692 retrieved articles were imported to the Covidence software program, an online platform that facilitates collaborative article screening, reviewing, and data extraction for systematic reviews. Members of a panel of eight reviewers determined if the articles met the a priori criteria during the full-text eligibility screening were included in the systematic review: (1) the article presents original primary research ; (2) is peer-reviewed; (3) is published in the English language; (4) was published between 2000 to 2018 and; (5) the full text of the article is available. Discrepancies between the raters with regards to inclusion during the screening process were discussed by a minimum of three panelists on the research team for resolution. The review panel identified 59 articles that met the a priori inclusion criteria for the systematic review for the closed-frame question on environmental factors and identified 14 articles that met the a priori inclusion criteria for the closed-frame question on management conditions  location where the study was conducted; (2) variety/cultivar of coffee; (3) environmental factor(s) and/or management condition(s); (4) coffee quality parameter(s) and; (5) summary of study outcome(s). The extracted data were reviewed by a second member on the review panel for verification and validity. Articles included in the systematic review were then grouped on the basis of the environmental factor(s) and/or management condition(s) which each study focused on. The environmental factors and management conditions assessed include: altitude , geographic location , light exposure , cultivar, nutrient management , pests and disease, water stress , temperature, and carbon dioxide. Articles investigating multiple environmental factors and/or management conditions were assigned to two or more groups. Given that some articles reported on multiple environmental factors and/or management conditions, the sum of the number of studies reported for each environmental factor and management condition is greater than the total number of articles included in this systematic review.A coding framework adapted from the systematic review methodology of Ahmed et al.  on tea qThe systematic review process identified 73 articles that addressed the inclusion criteria including 42 articles that focused on environmental factors associated with climate change, 20 articles focused on management conditions associated with climate change adaptation, and 11 articles focused on both. Ten prevalent environmental factors and management conditions were identified in the studies including: (1) geography; (2) altitude; (3) light exposure; (4) temperature; (5) water stress; (6) nutrient management; (7) type of cultivar; (8) pests and disease management; (9) fruit thinning and; (10) carbon dioxide . The finn = 18) and; 5 articles measured primary metabolites in coffee. Twenty-three articles measured multiple coffee quality parameters. Prevalent secondary metabolites measured in the articles include caffeine, chlorogenic acids , diterpenes (kahweol and cafestol), and other volatiles. The main primary metabolites measured in the reviewed studies are lipids/fatty acids, sugars, proteins, and amino acids. Prevalent sensory attributes measured in the studies include acidity, body, aroma/fragrance, taste, and balance.For the outcome of coffee quality, 26 articles measured the presence and/or concentrations of secondary metabolites in green or roasted coffee beans and/or brewed coffee; 18 articles measured sensory attributes of green or roasted coffee beans and/or brewed coffee (n = 26) followed by Ethiopia (n = 13). Studies were also carried out in Colombia (n = 7), Kenya (n = 4), India (n = 4), and Costa Rica (n = 4), among other countries. Fifty-one articles included Coffea arabica (Arabica coffee) as the study system, 11 articles included both Coffea arabica and Coffea canephora (Robusta coffee), and five articles included only Coffea canephora as the study system. Three articles included one or more species in addition to Coffea arabica and Coffea canephora as the study system  lipids  including overall cup quality and taster preference. Twelve articles found that cultivating coffee at increased altitude was associated with an increase in sensory attributes  examined in the articles on light exposure. Eight of the 12 articles examining effects of increased light exposure on sensory attributes of coffee found a decrease in coffee quality  found an inverse relationship  deficiency   increased altitude was associated with enhanced sensory attributes and; (2) decreased light exposure/increased shade up to certain thresholds was associated with enhanced coffee sensory attributes. Evidence gaps regarding the number of published studies and consistency of evidence was found for the environmental factors of carbon dioxide, temperature, and water stress as well as for the interaction between multiple environmental factors and management conditions. Several management conditions were identified as promising strategies for mitigating the effects of climate change on coffee quality that warrant additional research including shade management, selection of climate-resilient cultivars, tapping into wild coffee germplasm, soil nutrient management, and integrated pest management. Overall, greater evidence was found for the coffee quality outcome of sensory attributes compared to secondary metabolites, with a lack of studies examining the interaction between quality parameters. On the basis of the totality of evidence and the gaps identified, we conclude with recommendations for future research toward the design of evidence-based innovations for strengthening the resilience and sustainability of the coffee system from farm to cup.The evidence synthesized in this systematic review demonstrates that coffee quality is vulnerable to environmental factors associated with climate change including shifts in light exposure, water stress, temperature, and carbon dioxide. These findings highlight the narrow threshold of coffee with regards to optimum water and temperature thresholds and, are aligned with previous research in other plants such as tea , altitude (18 articles), and light exposure (19 articles). Altitude and light exposure were also the environmental factors with the most consistent evidence regarding the effects on the directionality  of coffee quality for sensory attributes. Evidence regarding the effects of altitude and light exposure on secondary metabolites was less consistent compared to sensory attributes; this inconsistent evidence is largely due to the fewer number of studies on secondary metabolites compared to sensory attributes. A moderate evidence base regarding the number of published studies was found for the effects of temperature (9 articles) and water stress (9 articles). Likewise, temperature and water stress had inconsistent evidence regarding effects on the directionality  of coffee quality. For example, in some cases increased temperature was found to result in improved sensory attributes of coffee , highlighting a critical area for future research. Understanding the effects of shifts in carbon dioxide is especially important given forecasted trends with climate change coupled with evidence on resulting shifts in crop yields and concentrations of certain primary metabolites  limited land; (2) potential threats to biodiversity associated with conversion of forested land to agriculture; (3) economic challenges for small-holder farmers to purchase affordable land; (4) socio-cultural challenges associated with moving small-holder communities who may have knowledge and identity tied to a place; (5) infrastructure / resource limitations such as road access and electricity and; (6) future threats to high-elevation areas with climate change. Given these limitations, there is a need to implement climate adaptation innovations to support coffee quality at all elevations, particularly in vulnerable small-holder communities who have a long cultural-history tied to coffee production.terroir. However, no clear trends were found for geographic areas that are more vulnerable or suitable with regards to coffee quality. Given the northward shift of agricultural under twenty-first-century global climate change scenarios  variation in research design across studies and lack of standardized experimental designs; (2) variation in definitions of coffee quality; (3) variation in approaches to measure coffee quality; (4) lack of studies examining relationships between sensory attributes and secondary metabolites; (5) lack of disclosure in the articles regarding certain variables such as type of coffee cultivar and management conditions of coffee cultivation; (6) the interactive and confounding nature of environmental and management variables that limit the ability to isolate the effects of a single factor on coffee quality; (7) limited long-term studies tracking temporal variation of coffee quality and; (8) coffee quality does not have a linear response to environmental and management variation and many studies do not capture the range of conditions to demonstrate this response.In addition, while this systematic review focused on coffee quality, our review found a lack of studies on the socio-ecological implications of shifts in coffee quality. Future research should address these limitations in order to strengthen the evidence base on the effects of environmental and management conditions on coffee quality, and implications for society, in the context of climate change.As weather patterns shift and global temperatures rise, long-term studies are called for in coffee agroecosystems as well as in controlled experimental setups to evaluate the interactive effects of climate change and adaptation innovations on coffee quality as well as yields. Climate projections of rising temperatures are projected to reduce coffee yields, particularly in low altitude regions  for coffee quality and, how does this vary with location, elevation, and management practices?What are the linkages between the coffee quality parameters of primary and secondary metabolite profiles and sensory attributes?What innovations from farm to cup support coffee quality, yields, sustainability, and the overall resilience of the coffee system?What are barriers and opportunities for climate-adaptation strategies for coffee systems such as diversified shade-grown systems and relocating coffee farms to higher elevations and higher latitudes? Do coffee producers have the willingness and capacity to adapt to climate change including access to natural and social capital such as economic resources, land access, ecological knowledge, and social networks?How do responses of coffee quality to various environmental and management conditions compare to other crops?As a culturally-relevant and highly flavorful drink consumed by a large global population, shifts in coffee quality have implications throughout the coffee system, from the smallholder coffee-producing communities in the global South to the 2.6 billion coffee consumers. This systematic review highlights that coffee quality is sensitive to shifts in environmental and management variables linked to climate change and climate adaptation. Synthesis of the totality of evidence across studies points to consistent trends regarding the effects of high altitude and low light exposure on enhanced coffee sensory attributes. Critical research gaps were further found where fewer studies exist including effects of carbon dioxide, temperature, and water stress on the directionality of coffee quality  as well as the interaction of multiple environmental and management conditions. Research gaps were also found with regards to the coffee quality outcome of secondary metabolites compared with sensory attributes, as well as their relationship. Management conditions such as shade management through agroforestry systems, cultivation of diverse climate-resilient cultivars, integrated pest management, and soil nutrient management were identified as promising strategies to offset negative environmental effects on coffee quality. Given the sensitivity of coffee quality to environmental variation, evidence-based innovations are called for to enhance the sustainability and resilience of the coffee sector in the context of global change. Such efforts should take a participatory research approach with the inclusion of diverse coffee stakeholders farm to cup as well as those that interact and support the coffee sector including practitioners, researchers, and policymakers.The original contributions presented in the study are included in the article/SA conceived of the systematic review and led the study protocol with input from all authors. SA and SC guided the systematic review teams. ES and SB led the review panel on environmental effects on coffee quality. ES, SB, TW, NV, and EA served on the review panel that identified, extracted, synthesized, and reported findings on the environmental effects on coffee quality. SB, AS, MT, CT, and SC served on the review panel that identified, extracted, synthesized, and reported findings on management effects on coffee quality. SB and ES created the figures. SA, ES, and SB led the writing of the manuscript with contributions from all authors. SA led the revisions of the manuscript for publication. All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.The authors received funding support for the study presented here from the following agencies: (1) United States National Science Foundation - Award NSF RII Track-2 FEC 1632810 (SA), (2) Tufts University, Tufts Collaborates Award 2019-N302201 (SC), (3) United States National Institute of General Medical Sciences of the National Institutes of Health–Awards P20GM103473 (SA), and Award 5P20GM104417 (SA).The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Science Foundation or National Institutes of Health.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and individuals with EB. Evidence based intervention is needed to establish a foundation of knowledge and to guide international practitioners to create and improve standards of care to effectively work with individuals living with EB. This clinical practice guideline (CPG) was created for the purpose of providing evidence based interventions and best clinical practices for the physiotherapy management of individuals with EB. A survey was conducted within the EB community and six outcomes were identified as a priority to address in physiotherapy management, including (1) attaining developmental motor milestones, (2) identifying safe and functional mobility in the natural environment, (3) encouraging ambulation endurance, (4) supporting safe ability to bear weight, (5) improving access to physiotherapy services, and (6) optimizing interaction with the community. A systematic literature review was conducted and articles were critically analyzed by an international panel consisting of thirteen members: healthcare professionals , caregivers, and individuals with EB. Recommendations were formulated from evidence and panel consensus. An external panel of twelve were invited to improve the quality and gather feedback on draft manuscript and recommendations. This CPG describes the development of recommendations for physiotherapy management including several best practice interventions. This guideline lays the foundational work for physiotherapist throughout the world to provide high quality services while improving and maintaining functional mobility and independence within the EB community. The CPG outlines limitations in the evidence available and possible future research needed to improve physiotherapy practice.The online version contains supplementary material available at 10.1186/s13023-021-01997-w. Epidermolysis bullosa (EB) is a rare genetic disorder characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Classification of EB is based on where the splitting occurs in the different layers of skin at a microscopic level. The four major types, subtypes and common areas affected that can lead to functional limitations are outlined in Table The severity of the condition is dependent on the pathology in relation to its types and sub-types, and the depth at which the blisters form. Considerable variations exist in disease severity and the natural history of patients, within even a single EB subtype or related pathological occurrence, because of the influence of environmental and/or modifying genetic factors. Individuals with EB do present with a wide range of disabilities; the most severely affected may have scarring, fibrosis and contractures affecting any part of the body. Acute or chronic pain and pruritus are also impairments that can limit and affect each individual person’s overall development, including, but not limited to delays in gross motor skills, limitations in functional mobility and decreased functional capacity to participate as a member of their family and in the community . When moThere is no cure for EB, therefore supportive care for relief of symptoms should be provided by an interdisciplinary team (IDT) whenever possible. A physiotherapist is an essential member of the IDT in treating individuals with EB.preventing disease, injury, and disability;managing acute and chronic conditions, activity limitations, and participation restrictions;improving and maintaining optimal functional independence and physical performance;rehabilitating injury and the effects of disease or disability with therapeutic exercise programs and other interventions;educating and planning maintenance and support programs to prevent re-occurrence, re-injury or functional decline.Physiotherapy is the art and science of physical or corrective rehabilitation. This practice includes the promotion and maintenance of physical fitness to enhance the bodily movement related to health and wellness of individuals through the use of physiotherapy interventions. Physiotherapists assist with:Physiotherapy is anchored in movement sciences and aims to enhance or restore function of multiple body systems. They are committed to enhancing health, lifestyle and quality of life (QoL) in a holistic approach. Management commonly includes assistance with specific exercises, manual therapy, working with individuals to prevent loss of mobility, recommending assistive devices, encourage functional movement, and restoring maximum movement. Practice is typically guided by evidence-based interventions . With thThus, current physiotherapy practices with individuals with EB are based on anecdotal care, clinical expertise and collaboration between caregiver and patient. Evidence-based clinical practice guidelines (CPGs) are needed to establish a foundation of knowledge to guide international practitioners to create and improve standards of care and to be able to work effectively with those living with the rare diagnosis of EB .Objectives of this CPG were (a) to provide evidence based recommendations for the management of physiotherapy services for patients with EB, (b) to provide a CPG for any physiotherapists that might encounter a patient with EB for the first time and provide them with resources on justifying improved mobility, flexibility and strengthening activities to improve cardiovascular involvement so that patients with EB can improve their QoL and (c) to identify areas where there is lack of evidence and promote future physiotherapy research.This guideline is aimed at physiotherapists, people with EB and their caregivers, rehabilitation practitioners, allied health professionals, nurses, occupational therapists (OTs), physicians/medical doctors, physician assistants, psychomotor therapists, nurse practitioners, social workers, educational staff and employers of individuals with EB. With intention to provide guideline recommendations to all subtypes of EB Table  and all In 2017, an international panel of 13 members was coordinated by DEBRA International through a voluntary membership. They represented physiotherapists, OT, nurses, dermatologists, parent/caregiver, person with EB, as experts  informed the first meeting to identify the clinical questions and outcomes prioritized for the CPG. The meeting was held in Salzburg, Austria during the 2017 EB CLINET conference with eight in-person panel members, three panel members via teleconference and remaining panel members provided input through minutes.A systematic literature review using eight search engines was conducted based on key terms, including years 1990 – 2020 with no language limits .Based on the evidence, we suggest that newborns and infants with EB receive developmental activities and positioning in order to optimize developmental motor milestone attainment from a physiotherapist. At birth and during prolonged hospitalizations, a physiotherapist, as a member of the IDT, can provide consultation for developmental activities and developmental positioning , 8. NewbIdentify soft surfaces, such as double lined fabric or sheep skin, when cradling or carrying an infant in order to decrease shearing forces.In addition to bandage wrapping, additional padding placed along the front of the knees and base of the palm can provide extra cushion to infants when they bear weight during crawling or creeping.Recommendation 2. We suggest consideration to optimize safe and functional mobility in their natural environment (Strength of Recommendation: C).For individuals with EB who are ambulatory and non-ambulatory, we suggest optimizing safe and functional mobility in their natural environment by providing mobility devices, enhancing functional activities, and endurance training through stretching, strengthening and balance exercises. Restrictions in joint and muscle movement due to blistering and repeated healing processes result in a shortened range of motion and can lead to permanent musculoskeletal abnormalities. These musculoskeletal abnormalities across the body would benefit from traditional physical therapy interventions, such as gait analysis, stretching exercises, strengthening activities, balance and coordination activities from clinicians who are familiar with EB , 11. TheDiscuss wrapping techniques to facilitate rather than limit functional mobility/proper movementWhen bandages cross the ankle joint, support a sub-talar joint neutral position and/or pull in direction of relative dorsiflexion to actively reduce the degree of plantarflexion contracturesRecommendation 3. We suggest consideration to optimize/enhance/elevate ambulation endurance and cardiorespiratory function (Strength of Recommendation: D).For individuals with EB, a physiotherapist would educate on bone health, weight bearing activities, standing frames, balance and strengthening activities to optimize ambulation, endurance and cardiorespiratory function across an individual’s lifespan. Individuals with EB and significant contractures or palpable yet immeasurable tightness, should regularly participate in active exercises . A physiEducate school personnel on the importance of continued ambulation versus utilizing a wheelchair when navigating school settings.Educate adaptive physical education programs on the importance of continued ambulation versus utilizing wheelchair when navigating school settings.Recommendation 4. We suggest consideration to optimize ability to safely bear weight (Strength of Recommendation: D).We suggest to optimize the ability to safely bear weight, a physiotherapist will recommend biomechanically appropriate shoe attire and insole. Varying degrees of reported pain can affect functional mobility, ability to ambulate and footwear choices even in the mildest localized forms of EBS . When blAn individualized assessment is important to guide the recommendation of footwear.Discuss/share general characteristics of shoe types/footwear, sock material, and images of orthotics and prosthetics to allow local resources to be utilized in creating biomechanically appropriate footwear as well as engage the patient in their own personal preferences, as far as possible.Recommendation 5. We suggest consideration to improve access to appropriate physiotherapy services (Strength of Recommendation: D).By providing education regarding physiotherapy services to local healthcare providers, caregivers, parents and public, we suggest this will improve access to appropriate physiotherapy services. The complete care of patients with EB requires an IDT that includes physiotherapist as a core member , 18–20. Educate the national and local physiotherapy organizations and chapters about EBPhysiotherapists to provide education to EB nurses at EB Centers and Wound Care TeamsKnowledge share with DEBRA International CPG Network to collaborate with primary physicians Knowledge share information with National Organization of Rare Diseases (NORD)Recommendation 6. We suggest to optimize interaction with environment (Strength of Recommendation: D).To optimize interaction with their environment, a physiotherapist should provide intervention by assessing appropriate positioning and posture using lower extremity bracing and splinting, seating and mobility options for individuals with EB . PhysiotConsider circumference of foot and ankle with bandages and/or layers of socks when recommending size of orthotics.During painful wound healing phases that limit functional mobility, physiotherapists advise utilizing a manual or power wheelchair to continue to optimize interactions within the environment.Tricycles for children and adults, as well as mobilized scooters, are another alternative to wheelchairs that can provide independence, strengthening, increased endurance and social interaction in the community.The recommendation summary has been grouped by age if the recommendation refers to a specific age level, see Table Individuals with EB can present to physiotherapy services with a wide range of deficits, including but not limited to joint contractures, strength and balance deficits, inability to bear weight, poor endurance, durable medical equipment needs, and pain that can lead to decreased functional interactions as an active participant in their family and within their community. Physiotherapy is an integral part of the IDT who evaluates and assesses gross motor developmental skills, impairments that limit functional movement within the home and community, weight bearing skills, durable medical equipment needs, endurance and education based on movement sciences. When not in active disease state, encourage physical and weight bearing activities to facilitate healthy bone mineral accrual . This CPCPGs in rare conditions have many challenges and limitations descending from small numbers of patient participation in studies to offer robust evidence. This results in a lack of good quality studies in therapies, such as physiotherapy in EB. This leads to a greater need for expert and clinical knowledge to be incorporated, but often there is limited and uneven distribution of knowledge, expertise and lack of EB-specializing professionals. In addition, our panel is predominately from pediatrics EB services as we found it rare for physiotherapists to specialize in adult EB services. 2020 also presented with the added difficulties of COVID 19 and reduced clinical capacity of many EB specialist physiotherapists, doctors and nurses, which did have an impact on getting more review panel members.Overall, the development of a physiotherapy management in EB handbook would be a beneficial tool with practical applications in the clinic setting. Table https://www.debra-international.org/eb-healthcare-resources) to ensure their availability and dissemination to clinicians, caregivers, and people with EB worldwide. DEBRA International recommends that the implementation of the CPG recommendations should be monitored and evaluated through audits. DEBRA International has designed a pre-implementation survey to help (https://surveyhero.com/c/aabc0100).It is anticipated that a literature search for new evidence pertaining to the provision of physiotherapy in EB will be undertaken every 3–5 years after the publication in order to update the guidelines. The CPG will be hosted by DEBRA international website (Additional file 1: Panel roles and contribution and external review panelAdditional file 2: PICO, Key Terms and Search EnginesAdditional file 3: Standardized Assessments and Outcome MeasuresAdditional file 4: Physiotherapy Evaluation Template for persons with EB


Maternal mental health problems and substance misuse are key risk factors for child neglect or abuse and court-mandated placement into care. Linkage between mental health records and family court data could raise awareness about parent mental health needs and inform approaches to address them.To evaluate data linkage between administrative family court data and electronic mental health records for a population-based mental health service for 1.3 million people in South London.We deterministically linked administrative family court data for women (n=5463) involved in care proceedings in South London with service user records from the South London and Maudsley NHS Mental Health Trust (SLaM). We restricted the cohort to women involved in proceedings between 2007 and 2019, in local authorities where SLaM solely provides secondary/tertiary mental health services and the Improving Access to Psychological Therapies (IAPT) (n=3226). We analysed the associations between match status and sociodemographic/case characteristics using multivariable logistic regression. Two-thirds  of women linked to a SLaM service user record at some point; most (91%) who linked accessed secondary/tertiary mental health services, indicating serious mental illness. Accounting for possible missed matches, we estimated that 70-83% of women accessed SLaM services at some point. Older women at index proceedings  and Black women or women from other ethnic groups  had lower odds of linking. Odds of linking were higher for women with an infant in proceedings , or with curtailed/terminated parental responsibility .Our linkage supports growing evidence of a high burden of mental health problems and substance misuse among women whose children enter care in England, compared to the general population. Research using this linkage should inform strategies to address the considerable mental health needs of vulnerable women and their children Two-thirds of women whose children were subject to care proceedings in four South London local authorities had linked mental health records at some point during a 12-year period: 91% of these women had contact with secondary or tertiary services indicating serious mental illness.These findings may underestimate need due to poor identifier quality (e.g. missing date of birth) and ascertainment biases relating to unequal access to healthcare. Sensitivity analyses estimated that 70-83% of women may have used mental health and substance misuse services over the study period.cris.administrator@slam.nhs.uk.Our linkage demonstrates the feasibility of establishing cross-sectoral linkages using administrative data sets and electronic patient records in England. Use of these linked data is encouraged and interested researchers should contact the CRIS administrator at While mental health problems (including those related to substance misuse) are very common among mothers in England , little Furthermore, involvement in care proceedings and having a child placed in care can, itself, have a negative impact on maternal mental health and substance misuse –6. This Traditional prospective cohort studies and surveys, which typically include only a small sample of the general population, are not well suited for research into the associations between parental health service use and child entry into care as very few (~3.3%) children in England ever enter care . In addiTo address this, we created a linked data resource, combining mental health and substance misuse service user records with records for women involved in care proceedings in eight local authorities in South London served by the South London and Maudsley NHS Mental Health Trust (SLaM). In collaboration with the Maudsley Biomedical Research Centre (BRC), this linkage has been established as a research database to be used in conjunction with data on the broader population of approximately 200,000 women accessing SLaM’s services. Together, these data will be used to generate a wealth of evidence on the interrelationship between women’s mental health and substance misuse and their involvement in care proceedings in England and will draw comparison with the broader population of women using SLaM’s services. This report describes how we linked data on care proceedings via deterministic rules to SLaM’s case register of service users and how we evaluated the quality of this linkage. We consulted the Maudsley BRC Data Linkage Service User and Carer Advisory Group with our initial research proposal to establish this research database . The groThe study cohort comprises public family court records for 5463 unique IDs assigned to women identified as the mother of a child subject to care proceedings that began or ended between April 2007 and March 2019 and were brought by one of eight South London local authorities. The local authorities were Bexley, Bromley, Croydon, Greenwich, Lambeth, Lewisham, Southwark and Wandsworth.SLaM is the sole provider of secondary and tertiary mental health services only in Croydon, Lambeth, Lewisham and Southwark. Therefore, much of this paper focussed on the sub-cohort of 3226 women involved in care proceedings in these four local authorities. The decision to include women in proceedings in Bexley, Bromley, Greenwich and Wandsworth for linkage was taken to improve sample sizes and generalisability of findings for research focussing on the use of specific mental health services among this population. For example, SLaM was the sole provider of substance misuse services to Greenwich and Bexley between April 2007 and March 2019, and to Wandsworth between August 2015 and March 2019. In England, care for mental health problems and substance misuse, including counselling and antidepressant/anxiolytic prescribing, is typically provided by general practitioners (GPs) in the first instance. GPs and other health or social care practitioners can also refer patients who do not respond to treatment, or who require specialist mental health care that cannot be provided by a GP, to secondary and tertiary mental health services provided by an NHS mental health trust (such as SLaM). In addition, people experiencing anxiety disorders and depression can self-refer, or, again, be referred by a health or social care practitioner, to community-based services providing psychological therapies , known as IAPT  services.SLaM is the sole provider of NHS secondary and tertiary mental health services in its four constituent local authorities , which, combined, have an estimated population of 1.3 million ,22. For Most of SLaM’s services use a bespoke electronic patient record (EPR) system, the electronic patient journey system (ePJS), to record information on service users. However, SLaM also operates IAPT programmes in Croydon, Lambeth, Lewisham and Southwark, which use the Iaptus EPR system. Therefore, SLaM hosts five EPR systems: ePJS, Iaptus Southwark, Iaptus Croydon, Iaptus Lambeth and Iaptus Lewisham, though service user information is not shared between them .To facilitate research, SLaM established the Clinical Record Interactive Search (CRIS) database in 2007, which contains anonymised records from each of these five EPR systems  22,23].,23.22,23Where local authorities seek the removal of a child from parents’ care through court order under the Children Act 1989, they must submit an application to the family court . The appThe case management system used by Cafcass captures information on all relevant adults and children involved in a public family law application . This inEach person in the Cafcass data is assigned a pseudonymised unique person identifier (‘Cafcass person ID’). Cafcass also captures information on relationships between individuals involved in a set of proceedings. Therefore, researchers can identify ‘case parents’ and follow them longitudinally, if they return to court. Cafcass data is available from April 2007 and therefore may capture only a portion of an individual’s involvement in care proceedings over their life-course. As the Cafcass and CRIS databases do not share a common unique identifier, such as the NHS number, person identifiers were used for record linkage. These included forenames, surnames, aliases, dates of birth and address postcode history (up to three postcodes in Cafcass and up to five in CRIS).We linked CRIS and Cafcass person identifiers using deterministic matching rules to deal with differences between identifiers for a single person in each data set that were related to erroneous recording or changes to identifiers over time (e.g. moving house or changing names). All women in our study cohort had non-missing forenames and surnames. We allowed a Cafcass person ID to match to multiple BRCIDs and vice versa. In total there were eight steps in our linkage algorithm, represented in descending order of leniency:Step 1: Exact or partial match on forename and surname. Exact match on full date of birth, and at least one postcode.Step 2: Exact match on Soundex code for forename and surname . Funding enabled but did not commission this study from; the National Institute for Health Research (NIHR) Great Ormond Street Hospital Biomedical Research Centre; the NIHR Children and Families Policy Research Unit [to LW and RG]; the NIHR Maudsley Biomedical Research Centre [to AJ], and Health Data Research UK [to RG].The views expressed are those of the author(s) and not necessarily those of Cafcass, the Nuffield Foundation, the NHS, the NIHR or the Department of Health and Social Care.Supplementary Appendix


ABSTRACT IMPACT: The model of the Clinical Research Support Center at the University of Minnesota of streamlining clinical trial infrastructure can be leveraged by the larger clinical trial community to create valuable efficiencies and facilitate faster initiation of research activities by supporting researchers from concept to dissemination. OBJECTIVES/GOALS: Substantial time, energy, and money are spent bridging disparate resources in research. We describe how the University of Minnesota’s (UMN) Clinical Research Support Center (CRSC) streamlines trial infrastructure, creating valuable efficiencies to support researchers from concept to dissemination. METHODS/STUDY POPULATION: The CRSC, established in 2018 through the Clinical and Translational Science Award (CTSA) program, brings resources together in a single, centralized, and convenient location to help researchers navigate the UMN clinical research startup process and specifically to assist with the development and initiation of a research study from feasibility assessment to project opening. Diverse expertise in components of human subject research is available to support the broad scope of projects at a large institution like the UMN. We present how CRSC services, when coordinated by Clinical Research Specialists, have been used to improve access to clinical research resources during the start up process. RESULTS/ANTICIPATED RESULTS: Since inception in 2018, the CRSC has provided support to over 1700 studies with 437 research projects referred to a Clinical Research Specialist within the CRSC. Of those projects, 97 (22.2%) received comprehensive support from the following expert groups: regulatory guidance (n=74), biostatistics (n=68), clinical  partners (n=60), recruitment (n=36), budget development assistance (n=30), and (bio)informatics (n=27). Successful examples of synergies to streamlining study start up include shortening the window between protocol development support from Clinical Research Specialists and IRB submission preparation through to Regulatory Specialists to 3 days. DISCUSSION/SIGNIFICANCE OF FINDINGS: Providing cross-functional support to research teams through the CRSC increases the likelihood of quicker and successful execution and completion of research initiation and subsequently impacts the dissemination of that research to patients and the broader community.