Finally, we offer hypotheses to explain why Lwoff altered Monod’s statement.Diauxie is at the origin of research that led Jacques Monod (1910–1976), François Jacob (1920–2013), and André Lwoff (1902–1994) to win the Nobel Prize in Physiology or Medicine in 1965 for their description of the first genetic regulatory model. Diauxie is a term coined by Jacques Monod in 1941 in his doctoral dissertation that refers to microbial growth in two phases. In this article, we first examine Monod’s thesis to demonstrate how and why Monod interpreted diauxie as a phenomenon of enzyme inhibition or suppression of adaptive enzymes. We also briefly investigate prior enzyme suppression studies, before Monod’s work, which indicate that he is the first person to observe diauxic growth. Second, we analyse Monod’s post-thesis publications throughout his scientific career, revealing that diauxic inhibition was a significant part of Monod’s scientific activities and greatly fascinated Monod until the end of his life. Paradoxically, Monod’s work and interest on diauxic inhibition are still neglected in historical recounts, focused mostly on Monod’s enzymatic adaptation studies. Indeed, we uncovered a statement by Monod’s colleague, Lwoff, who transformed a quotation from Monod by replacing the word  Without wishing to anticipate the conclusions of this work, we can indicate that this phenomenon is linked to a variation in enzymatic power that occurs in the presence of certain carbohydrate mixtures. More precisely, it seems that it is a phenomenon of enzyme suppression. Monod , p. 2Within the Discussion section of the chapter Le mécanisme de la diauxie, Monod cited as precursors of enzyme suppression by glucose, the previous works of Frederic Diénert . Our analysis indicates that while Monod considered diauxie to involve both adaptation and suppression mechanisms, it was the phenomenon of enzyme suppression that most preoccupied him, as described in the introduction of his dissertation: Diénert  and Marj-galactosidase rather than on its suppression by glucose. We further discuss the potential impact of the operon model, developed from 1959 to 1961 with his collaborators François Jacob and Arthur Pardee (1921–2019), on his glucose inhibition studies, for which diauxie is one example. Finally, we show that in the last ten years of Monod’s career, he and his close collaborator Agnès Ullmann (1927–2019) published a few articles about the glucose effect (catabolite repression), using diauxie systems. Taken together, the analysis of Monod’s publications demonstrate that Monod remained interested in the phenomenon of diauxic inhibition throughout his entire scientific career, as shown in his posthumously published article . The rest of this presentation will, I hope, convince you that this is indeed a new and defined problem, which needed to be distinguished by a special term. Monod , p. 139The first two chapters explain and explore diauxie.In the first part of his thesis, Monod showed that the bacterial growth rate values vary according to the nature of the sugar added to the synthetic growth medium. The question then arose as to the relationship among the enzymes that degrade these sugars, specifically, whether they are dependent on each other or act separately. In an attempt to answer this question, Monod quantified the growth rate in a medium containing two sugar sources. It was during this experiment that he observed an unexpected result:Le phénomène de diauxie, Monod described results obtained by a systematic study using many combinations of sugars and three different bacteria, comprised of Bacterium (Escherichia) coli, Bacillus subtilis, and Bacillus typhimurium . His work showed that the phenomenon of diauxie is restricted to certain mixtures and it classified sugars according to their behavior in the presence of glucose, either A sugars which do not cause diauxie, or B sugars which give rise to this phenomenon.In the first chapter, entitled La nature du phénomène de diauxie, Monod described how variation in the concentrations of A and B sugars impacted the outcome. He demonstrated that total growth at the end of the first cycle always changed in proportion to the concentration of the A sugar added to the culture. Likewise, the second growth cycle always varied in proportion with the concentration of the B sugar. Monod thus concluded that the A sugar is fully utilized during the first cycle of growth and that subsequently the B sugar is used during the second cycle of growth. If we consider, following Monod, the examples of different proportions of glucose (A sugar) + sorbite (B sugar), we see how Monod demonstrated that glucose is entirely consumed at the end of the first growth cycle  diauxie is not eliminated by preadaptation to growth in the B sugar, and (2) diauxie occurs even if the A sugar is added when the consumption of B sugar has already begun. Therefore, Monod concludes that neither genetic mutation selection nor adaptation can fully account for diauxie. Rather, he insists that adaptation is “powerless” to explain all aspects of this phenomenon:.  distinguishing constitutive and adaptive enzymes:This author , the adaptation to sugar B is inhibited. Adaptation is suppressed if it is already acquired.  the adaptation to B sugars is inhibited. The existence of such a phenomenon has already been reported by some authors whose conclusions are in agreement with those of the study of diauxie…..  were not independent. If one existed, it slowed the speed of the second…. Monod rediscovered the phenomenon that, in 1900, Dienert had already observed in yeasts: the presence of some specific sugars  inhibits the fermentation of other sugars by the bacteriumTherefore, to understand the relevance of Diénert and Stephenson’s team for Monod’s study of diauxie, it is important to investigate and compare their cited works to the description found in Monod’s thesis.Towards the end of his thesis, Monod cites “cases of enzyme suppression” that had been published prior to his own work. These included the studies of the French Pastorian Frederic Diénert and the English team led by Marjory Stephenson:rs Monod , 1966. FSur la fermentation du galactose et sur l'accoutumance des levures à ce sucre (1900).Frédéric Diénert (1874–1948), a representative of the third generation of Pasteurians, was a student of Emile Duclaux (1840–1904), who succeeded Louis Pasteur (1822–1895) as the head of the Institute he had founded in 1888. The work that is cited by Monod concerning the glucose effect was discussed in Diénert’s thesis, Accoutumance des levures au galactose, Diénert first showed that yeast must be “habituated” or adapted to galactose before it is able to ferment this sugar. In order to assess the duration and conditions of galactose habituation, Diénert grew cultures in the presence of galactose to accustom the yeast to this sugar, then washed the cells and placed them in a medium containing either galactose or glucose. His results showed that some sugars, such as glucose, cause the cells to partially lose their habituation to growth in galactose. Importantly, according to Diénert’s experimental protocol, glucose and galactose were not mixed together, as Monod did, but were added successively, starting from the same preculture.In Chapter 3, Mélange de deux sucres et acclimatation, Diénert described what happened when glucose and galactose were added together, similar to the diauxic growth conditions performed by Monod . But in contrast to Monod’s interpretation, Diénert concluded that glucose helped yeast to grow by promoting the habituation to galactose:As we have already seen, the addition of a small amount of glucose to the culture medium restores the vitality of the yeast while at the same time promoting its “habituation” to galactose. Diénert , p. 177Interestingly, in a medium containing a mixture of two sugars, Diénert’s observation does not support and indeed contradicts Monod’s observation of diauxie. This discrepancy could be explained by the fact that Diénert’s growth measurements were imprecise and therefore could not allow him to observe the two growth phases. The difficulties in interpreting Diénert’s data are reported by Stephenson and Yudkin:These experiments of Diénert, though highly suggestive, are difficult to interpret owing principally to their non-quantitative nature, rates of fermentation, quantity of yeast and change in cell numbers not being recorded.  and Ernest Gale (1914–2005), developed a line of research to understand the problem of enzymatic adaptation. During work on enzymatic adaptation to galactose, Stephenson and Yudkin showed that glucose had a suppressive effect on galactozymase activity in yeast cells when glucose is added to a preadapted yeast culture in media containing galactose. As they explained, “In confirmation and extension of earlier work we find that adapted cells lose their galactozymase completely after fermenting glucose and regain it in the presence of galactose”  team at the University of Leeds  is involved in the synthesis of the interacting enzymes. Monod , p. 259Thus, by the end of the 1940s, both enzymatic adaptation and diauxic inhibition were studied by Monod in the context of his common precursor model in order to understand the fundamental question of enzyme formation. This was described by his closest collaborator during this period, the Italian researcher Annamaria Torriani (1918–2013):The core of the question in those days (1948–1950) was to understand why there was an increased rate of enzyme formation upon addition of the substrate (adaptation) or a diauxic inhibition. The working hypothesis in the lab was that “many different enzymes may stem from a common precursor or pool of precursor molecules.” Torriani , p. 44However, enzymatic adaptation studies required more refined experimental approaches. Thus, new experimental tools were devised to test the validity of the common recursor model.In 1943, Monod proposed an alternative model of enzyme formation to explain both enzymatic adaptation and diauxic inhibition. While Monod retained Yudkin's idea of an enzyme precursor, in his model the precursor became common to several enzymes, which only formed after the interaction of the common precursor with one of the sugar substrates Fig. a. This mE. coli in 1948 became Monod's preferred enzyme model  was, perhaps, an unfortunate choice since the word “adaptation” has an old and well established meaning…We therefore propose the following terms and designations; previously used terms are placed in parenthesis. A relative increase in the rate of synthesis of a specific apo-enzyme resulting from exposure to a chemical substance is an “enzyme induction” (enzyme adaptation). Any substance thus inducing enzyme synthesis is an enzyme “inducer.”  that was extracted and purified from The incorporation data demonstrate conclusively that the induced synthesis of β-galactosidaseinvolves the complete de novoformation of the molecule from the elements. The hypothesis that the induced enzyme is a conversion product of another protein, formed and accumulated in the absence of inducer, is eliminated.  is exerted by a variety of carbohydrates, among which glucose is by far the most potent…. Its mechanism is not clear, but it is conveniently described by the assumption that glucose, even at remarkably low concentrations, is able to prevent the penetration of certain carbohydrate-inducers into the cell. In other words, the glucose “diauxic effect,” whatever it is, appears to be exercised on the earlier, if not on the very first step, of the “inducer metabolism.” . Studying the bacterium Aerobacter aerogenes (Klebsiella aerogenes), Magasanik, along with his PhD student Frederick Neidhardt (1931–2016), showed that the presence of glucose does not prevent the uptake of galactose. Evidence was provided by measuring the quantity of both sugars in culture cells using the recently updated method of paper chromatography . The same year, Monod published with François Jacob the genetic regulatory operon model , and no other adenine nucleotide derivatives tested, was specifically closely linked to “catabolite repression.” The role of cAMP was then evaluated using different diauxic systems. Their results indicated that cAMP suppresses all of the diauxies analyzed   Monod, in his thesis, was the first to observe diauxic growth, which he interpreted as a consequence of enzymatic inhibition of adaptive enzymes; and (2) Monod devoted a significant part of his scientific efforts towards understanding the mechanistic aspects of diauxic inhibition while studying enzymatic adaptation. During the 1940s and 1950s, the subject of diauxie remained important to Monod, as can be seen in his published biochemical models of enzyme adaptation, renamed induction , as Lwoff had suggested, Monod tended to interpret "diauxie" as an example of enzymatic adaptation, as defined by Diénert and Karström. Schwartz , p. 24However, Agnès Ullmann, his close collaborator, emphasized that Monod interpreted diauxie as a phenomenon of enzyme inhibition:. (Ullmann His interpretation of the diauxic growth phenomenon was that glucose (the first sugar used by the bacterium) inhibited the formation of an enzyme necessary for assimilating the second sugar; the latency period between the two growth phases corresponded to the “induction time” of that enzyme Ullmann , p. 69Attempting to understand this contradiction, we compared Lwoff’s statement with Monod’s original Nobel Prize speech. In it, he stated:Lwoff’s intuition was correct. The phenomenon of "diauxie" that I had discovered was indeed closely related to enzyme adaptation, as my experiments, included in the second part of my doctoral dissertation, soon convinced me. It was actually a case of the "glucose effect" discovered by Diénert as early as 1900, today better known as "catabolic repression” from the studies of Magasanik. The die was cast. Since that day in December 1940, all my scientific activity has been devoted to the study of this phenomenon. Monod , p. 475Monod thus makes clear in his own words that diauxie is attributable to the “glucose effect” and not to enzymatic adaptation, another closely related observation. This nuance is very important because, as Monod states here, he remained faithful to what he understood about diauxie during his thesis twenty-five years earlier. From these carefully chosen words by Monod in his Nobel Prize speech, we believe that the meaning of the word phenomenon at the end of this quotation is the same as its use at the beginning, that is, the "phenomenon of diauxie." In this light, Monod stated that he had devoted all of his scientific activity to the study of diauxie and the two aspects of this biological phenomenon: the inhibition and induction of enzymes.Finally, there may be an even more precise reason for why Monod’s diauxie story has been buried in the annals of history. We have examined various historical accounts that describe discussions between Monod and his mentor Lwoff in 1940 at the Pasteur Institute. According to most of these accounts, Lwoff suggested that diauxie was a phenomenon of enzymatic adaptation. Monod accepted Lwoff's hypothesis and subsequently devoted his future research activities to work on enzymatic adaptation, as recounted in the following anecdotes:phenomenon by that of enzymatic adaptation was Lwoff in his 1977 obituary of Monod commissioned by the Royal Society:Jacques Monod told how, in December 1940, at the Institut Pasteur, he came and showed me the diauxic curve and asked: “What could that mean?” I said it could have something to do with enzymatic adaptation. The answer was: “Enzymatic adaptation, what is that?” I told Monod what was known—what I knew—and he objected that the diauxic curve showed an inhibition rather than an “adaptation.” We know today that repression and induction are complementary, but I simply repeated that diauxie should be related to adaptation…. It turned out that glucose was inhibiting the synthesis of a few enzymes responsible for the metabolism of the other sugars-catabolite repression—but the enzymes involved in diauxie were nevertheless “adaptive.” Induced enzyme synthesis was the key to diauxie… “From this very day of December 1940,” wrote Jacques Monod, “all my scientific activity has been devoted to the study of enzymatic adaptation.” Lwoff , p. 388Thus, Lwoff publicly stated that from December 1940, Monod was convinced that enzymatic adaptation (renamed later “induced enzyme synthesis”) was the key to diauxie. Consequently, Monod devoted all of his scientific efforts towards understanding enzymatic adaptation and not inhibition. Now, we ask, why might Lwoff intentionally have altered Monod’s words? We offer three non-exclusive hypotheses. First, Lwoff may have found this scenario from enzymatic adaptation to the operon more straightforward to transmit to scientists and general audiences. This simplified interpretation of Monod’s diauxic studies, however, thus completely changed the meaning: Instead of Monod’s sentence, “Since that day in December 1940, all my scientific activity has been devoted to the study of this phenomenon,” Lwoff substituted the term enzymatic adaptation. Monod's work would have been more complicated to explain if one had to include his work on enzymatic inhibition in addition to that of enzymatic adaptation.To our knowledge, the first to replace the word “Enzymatic adaptation” remains thus far the only phenomenon that directly gives rise to experimentation on the ontogeny of enzymes. This is what makes it interesting, and it is from this point of view that we envision it. (Monod and Cohn The leading group in this field was Marjory Stephenson’s team at Cambridge, in which Yudkin had proposed his model of adaptive enzyme formation he called “mass action theory” (Yudkin The second hypothesis is scientifically based. In his obituary tribute to Monod, Lwoff recognized that for Monod the “diauxic curve showed an inhibition rather than an adaptation” Lwoff , p. 388.” Yudkin . Thus, wphenomenon to adaptation relies on the fact that diauxie was the origin of the Nobel Prize-winning story for Lwoff’s French, Pastorian team. Even though the phenomenon of diauxie is linked to both adaptation and inhibition of enzymes, it was the work on enzymatic adaptation or induction that lead to the 1965 Nobel Prize. Furthermore, Monod’s studies concerning glucose diauxic inhibition were overtaken by his competitor, Magasanik, who interpreted the effect of glucose during diauxie as part of a more general phenomenon, catabolite repression (Magasanik According to Monod, the first to have discovered the phenomenon would have been Emile Duclaux. However, before Duclaux, there had been Pasteur himself…. This is exactly what Monod would later rediscover and call "diauxie." Schwartz , p. 22However, if we now consider diauxie with its two aspects, enzymatic inhibition and enzymatic adaptation, no members of this Pastorian lineage before Monod, neither Pasteur, Duclaux, nor Diénert, would have been able to observe the diauxie phenomenon because they did not have access to the proper experimental conditions. In fact, the team that came the closest to using experimental conditions as those of Monod was that of Marjorie Stephenson three years before Monod’s diauxie discovery in 1940 (Stephenson and Gale Our last hypothesis as to why Lwoff changed Lwoff's public modification of Monod's Nobel discourse in his obituary tribute to Monod exerted a major influence on subsequent historical accounts. It related Monod’s research on enzyme adaptation with the operon model, but not diauxic inhibition. Even today, the importance of Monod’s research on diauxic inhibition continues not to be fully recognized. Despite Lwoff's insistence that Monod's discovery was a case of enzymatic adaptation, as this article shows, Monod, for his part, never relinquished his passionate interest in diauxic inhibition.


This article presents a theory explaining how young adults living with Williams syndrome (WS) learn life skills through music. The article answers the question: What theory explains how young adults living with WS learn life skills through music? The theory presented in this article is informed by principles of care ethics and compassionate music education and theories of wellbeing and flourishing. The theory is further informed by empirical data, including data collected during semi-structured interviews, casual conversations, observations, field notes, and social media and blog posts collected at Berkshire Hills Music Academy, Massachusetts, USA, over six weeks. Thematic analysis was the data analysis strategy. The theoretical proposition represented by the findings is: (i) If young adults living with WS have the opportunity to learn through engagement in music activities within a safe environment in which they are engaged, supported, appreciated, motivated, feel that they belong and feel that they are competent, and (ii) if educators are willing to focus on the abilities of these young adults by putting their needs first, (iii) then young adults living with WS should be able to overcome various challenges and ultimately develop the life skills they need to live well. It is said “the deeper the mud the lotus grows in, the more beautiful its flower” , p. 32. This study was inspired by my personal experiences as a music educator in secondary and tertiary education, my passion for advocating for access to quality, meaningful music education, as well as previous experiences with individuals living with WS ,6. This Compassionate music education promotes a focus on individuality which supports an abilities-first, strengths-based approach to teaching and learning. Compassionate music education also acknowledges shared humanity and prioritises emotional virtues related to kindness, care, empathy, sympathy, and a response to the suffering of others ,13. FurtWS is a neurodevelopmental genetic disorder that occurs when roughly 20 genes are deleted from chromosome 7 during conception and affects 1 in 10,000 people worldwide ,15,16. TCoping with various everyday challenges  ,35,37,38Connecting with others and fostering meaningful relationships ;Feeling good and managing emotions  ,39;Being hopeful ;Developing vocational competence ,41;Being self-sufficient , and;Living well ,37,41.According to Hodge et al. , scholarMusic and the arts have been found to enhance the learning processes of individuals in the general community and, specifically, to meet the needs of those who are intellectually disabled ,26,27,28The affinity that young adults living with WS display toward music ,47,48,49Educational programmes focusing on talent development and enrichment through music could consequently allow young adults living with WS to learn optimally. Educational programmes structured around music, talent development, and principles associated with an abilities-first approach could enable these young adults to cope with challenges in everyday life, while also avoiding the paternalism and pressure that comes with an educational focus on deficits and the fixing of certain problem areas. Music could consequently be used not only as a means for acquiring the life skills needed to connect with others and to cope with everyday life, but also to provide young adults living with WS with a fun, manageable opportunity to learn skills that will ultimately permit them to become independent and live fulfilling lives ,45. For This qualitative study follows an instrumental, theory-building case study approach and is informed by social constructivism . The pheAccording to Anfara and Mertz , a theorThe empirical data for this study were collected by following an instrumental case study approach to explain the identified phenomenon within a real-life context and bounded system ,52,54. CBHMA offers a post-secondary transition programme through a Two-Year Certificate Program focused on teaching life skills, communication skills, vocational skills, and music to young adults who are intellectually divergent. The programme aims to prepare these young adults for independent and community living. BHMA also offers a programme where graduates of the Certificate Program can become LIVE members (Long-Term Independent Vocation Experience ensemble groups for students who choose music as their vocation after graduating from the two-year programme) while following programmes specifically tailored to their individual needs, or whereby they can join the Performance Troupe . During my six-week visit to BHMA, I focused on young adults with WS who are part of the LIVE programme or the Troupe. BHMA was identified as the site for data collection as it is the only institution of its kind, as far as I am aware of, that focuses on meeting the needs of young adults living with WS through music. When the academy opened its doors in 2001, 85% of the students enrolled had WS. The idea of a music academy focusing on special needs was coined after several music camps were held by the Williams Syndrome Association over 10 years and the Music and Minds programme was hosted by the University of Connecticut in 1998–1999.Data were collected over six weeks at BHMA and include photos, videos, notes on participant observation, transcripts from in-depth, semi-structured interviews, and transcripts of informal conversations with BHMA staff and students attending BHMA. During the six weeks, the researcher observed between 12 and 15 classes per week. During observation, the researcher focused on the interaction between participants and participants and staff, relationships, processes during the learning process, the type of skills that are being facilitated, participant reactions, behaviour, and routines. These classes included ensemble practice, choir practice, dance, and individual music lessons. Weekly Variety Hour concerts were also observed on Friday afternoons. During the concerts, young adults attending BHMA had the opportunity to share their skills and talents with BHMA students and staff, family, and community members. I also accompanied various ensemble groups on community-based performances on Wednesdays. Interviews with music educators and music therapists at BHMA and with parents of young adults living with Williams syndrome lasted between 40 min to 1 h. Staff member Liz participated in two interviews, and we further had various conversations of which I took notes. My conversations with BHMA students Thorny Rose and Tori lasted roughly 30 min and Tori responded to questions via email at a later stage. Data further include posts from the BHMA public Facebook page and blog ,54,55,56Data were analysed through thematic analysis in ATLAS.ti 8. During data analysis, process coding was utilised to focus on routine, activity, actions, behaviour, time, and sequence ,58,59. DThe BHMA board of directors granted permission to collect data at BHMA before potential participants were contacted. All the participants completed informed consent forms and ethical clearance was obtained to conduct the study. The findings that emerged from this study were further shared with participants to ensure that the conclusions that were drawn accurately represent the participants and BHMA. All the names included in this article, apart from BHMA (with permission from stakeholders), are pseudonyms. The trustworthiness for this study was ensured through prolonged engagement, an intimate knowledge and understanding of the research topic and context, and multiple sources as evidence during data collection ,52,62,63The findings presented in this section are informed by five theoretical components: (1) central phenomenon and context (engaging in music activities facilitates learning); (2) causal conditions ; (3) strategies  intervening conditions (conditions inhibiting learning for young adults with WS at BHMA); and (5) consequences (life skills) .At BHMA, young adults living with WS learn life skills through engaging in music activities which include (1) individual lessons, (2) participating in music making with others by moving with others and being part of ensembles, and (3) music performances. The “enduring connection” that these young adults have with music is at the core of the BHMA curriculum. For Horn Man’s mother, Mrs Ellers, the “sharing of music is important” and is an integral part of the success of BHMA. Liz and Johann, both BHMA staff members, emphasised that engagement in music activities is a key factor in the acquisition of life skills for young adults with WS at BHMA. Johann further stated that “music is truly the one factor that ties our sessions with WS students together” and that music “tremendously accelerates their learning process”. When speaking about the importance of music in his life, Allan said that “(m)usic is very important because it has a big impact in my life, and it helps me learn”. During my time at BHMA, and from observing and listening to the staff and the young adults with WS attending the Academy, it became clear that without engagement in music activities, these young adults might not acquire life skills as efficiently and successfully. For the young adults with WS at BHMA, engaging in music activities at BHMA and in the local community not only acts as a motivator to learn and step out of their comfort zones, but also facilitates their learning.During the six weeks that I spent at BHMA, I witnessed how Tammy’s confidence and sense of self improved as a result of the support and encouragement that she received during her individual lessons. For Angela and Thorny Rose, individual lessons provide opportunities to work on vocational skills and to learn repertoire that enables them to express themselves and share their stories through music. Most of the ensemble sessions at BHMA are rehearsal opportunities, apart from the times when these young adults rehearse for their individual lessons. Rehearsal is consequently an integral part of the BHMA curriculum, as it encourages students to be “engaged in the music activity and to be present in practising and rehearsing” while working towards “life skills and social skill development”.I believe that the learning environment that the founders envisioned and that BHMA staff have created over the years plays a vital role in the way that young adults living with WS enrolled at the Academy acquire life skills. During data analysis, seven causal conditions emerged as being integral to how the BHMA programme is structured. The success of the BHMA programme is, therefore, partially determined by the fact that young adults with Williams syndrome at BHMA (1) have the opportunity to learn within a safe environment, (2) are supported, (3) feel appreciated, (4) experience a sense of belonging, (5) feel motivated to learn, (6) are engaged in the learning process, and also by how (7) BHMA staff have managed to create a space in which young adults living with Williams syndrome can feel competent.When I spoke with Liz, a staff member at BHMA, about their programme and their vision, she said that “helping the students have a safe place is the first piece that we try to create, and I think we were successful in creating (this) years ago”. She also stated that “if the environment in which they are learning and living is safe, then their resistance or their fight-or-flight response isn’t engaged” and, therefore, their “ability to absorb that incoming information is that much more present”. It thus became clear that it is one of the top priorities of the BHMA staff to create an environment in which young adults with Williams syndrome can “feel comfortable” and safe while they learn, and that creating this type of environment ultimately promotes optimal learning for these young adults. Just as Liz spoke about young adults with WS needing to feel supported and safe, she also said that “the second piece was respect, and creating an atmosphere here where the students feel respected and that they’re valued”. Liz specifically mentioned, with reference to young adults with WS, that “the connection to music really helps initiate (their learning)” and that an environment where they feel appreciated “is really where the learning and the growth and the blooming happens”. She supports this by stating that “you can get very clinical about it or very not clinical about it, but I think the core of it all, and from a psychology perspective, the core of the human nature is wanting to feel valued”. Data analysis confirmed that BHMA staff were successful in creating spaces where young adults with WS are celebrated for their abilities. During a conversation with Mrs Ellers, Horn Man’s mother, she spoke of BHMA being an “island of competence”—a place where people’s various abilities are celebrated rather than drawing focus to their struggles. Through various conversations with students, parents, and staff, as well as through my observations at BHMA and (ultimately) data analysis, I have come to understand that, without having this particular kind of space—where all the young adults living with WS are celebrated for their unique abilities, where they feel safe, supported, appreciated, motivated, engaged and that they belong—the programme would not be as successful.At BHMA, the staff facilitate the life skills acquisition of young adults living with WS in various ways. The curriculum at BHMA is mostly based on (1) an abilities-first approach, which allows staff to also shift the focus away from the internal struggles that these young adults might be dealing with. The programme is further structured in a way that promotes (2) an experience-first approach while supporting (3) character development among students. BHMA staff also strongly encourage (4) collaborative learning. At BHMA, staff further support students in (5) developing emotional intelligence, while working on their (6) coping skills and (7) fostering hope. Ultimately, BHMA staff want to enable young adults with WS to acquire (8) vocational competence through music.Liz is very passionate about BHMA’s abilities-first approach and spoke about “celebrating” the unique abilities of every young adult attending BHMA. She also mentioned that “we look at what you can bring to the table and how we can help you”. The music curriculum at BHMA is structured in such a way that the “musical material is carefully chosen, specific to the individuals in the group, to be challenging but attainable”. Staff member David mentioned how he appreciates that he is “able to be part of a team that is constantly ready and willing to break the mould if it benefits our students. Our strength lies in our ability to combine both structure and flexibility”, “while putting the goals and needs of our students first”. One of the key focuses of the BHMA curriculum and strategies is to draw attention away from internal struggles by using music as “a motivating factor to address life skills goals”. Staff members consequently rely on the musical aptitude of young adults with WS and on experience-first approaches to “help develop skills in other areas” because “it’s harder to do it without it”. Throughout the six weeks that I spent at BHMA, I came to realise that the “positive and interactive musical experience” that BHMA offers young adults with WS—“regardless of ability level”—is an integral part of this particular island of competence.At BHMA, staff members David and Johann consciously facilitate the students finding their place, not only in the ensembles but also in the world, by learning what “values they bring to the group”. It was interesting to see how dance instructor Leanne supported young adults with WS in the Zumba class to find their sense of self. This was especially clear in the case of Jack, who has a strong sense of self. During my visit to BHMA I had the privilege of watching as Tammy, Abe, and Matt’s sense of self and self-esteem developed as a result of the time and attention of BHMA staff during Zumba, individual lessons, and ensemble rehearsals.Another key goal of BHMA staff is to support young adults with WS in developing their vocational competence. In order to do this, they focus on the development of (1) musical ability, (2) problem-solving skills, (3) career management, and (4) professionalism. When speaking about the goal that BHMA staff have of working towards developing the vocational skills of young adults with WS, Liz said that “being a musician is more than just, you know, singing a great song. There’s a lot else that goes into it, and those basic work skills are really hard”. The increased focus on developing vocational competence among young adults with WS is partly influenced by the higher demand that the world has for these young adults to have a vocation and become more independent. When BHMA staff encourage young adults with WS to set their own goals and make decisions, they ultimately enable them to be successful in their careers. It is also important, however, to discuss the conditions at BHMA that could inhibit the acquisition of life skills for young adults with WS if the staff do not intervene successfully.During my six-week visit to BHMA and during data analysis, I noticed that there are various circumstances that have the potential to inhibit young adults living with WS from successfully learning life skills through music. I was, however, pleasantly surprised at how BHMA staff managed these situations. At BHMA, the degree to which young adults living with WS acquire life skills relies on how the staff manage the fact that many of these young adults tend to have (1) an innate desire to please others, which is possibly related to the perception that young adults with WS often (2) have a low self-esteem. Furthermore, young adults living with WS tend to (3) face specific physical, cognitive, and social challenges, which could explain why they (4) experience negative emotions, which often lead to (5) inappropriate behaviour. Some of the young adults living with WS at BHMA also sometimes struggle with (6) being self-centred, which is sometimes associated with a display of inappropriate behaviour.Data analysis revealed that, for young adults with WS, “their innate desire to please others blocks their self-realisation” and that they are often “fearful of offending others”. These young adults also tend to struggle with self-esteem, which could be related to the various physical, cognitive, and social challenges that they face daily. One of the BHMA staff members mentioned how young adults with WS have “personality quirks that are huge social challenges for them” and that, although “they bring so much talent and wonderful ideas, and sweet genuineness, they struggle with social skills”. However, during my visit to BHMA and during data analysis, it became clear the staff are sensitive to various conditions that might hinder life skills development for young adults living with WS and that they are able to—through their abilities-first, strengths-based strategies—intervene and assist these young adults in overcoming these challenges. BHMA staff carefully and caringly support these young adults in learning acceptable behaviours which enable them to acquire the life skills they need to live well.The last theoretical concept that I will discuss in this article focuses on the life skills that young adults living with WS learn through music at BHMA, which, in this case, is the consequence of their learning. Data analysis revealed nine life skills that the young adults at BHMA learn through music. Through music, these young adults are able to (1) build their character and (2) connect with others, which consequently supports the development of their (3) emotional intelligence. Engagement in music activities creates opportunities for these young adults to develop (4) coping skills, (5) be hopeful and acquire the necessary skills to become (6) independent. One of the main goals of BHMA staff is to facilitate the development of their (7) vocational competence, which in turn contributes towards them (8) feeling good and ultimately (9) living well.Through the data analysis I realised that young adults with WS at BHMA often experienced increased self-esteem after a successful learning experience; that they became more self-aware, developed a stronger sense of self, and found their voice. Through music, Allan has been able to “develop his sense of self”. Similarly, music has helped Sizzle to “embrace her strengths and passion for life”. Sizzle supported this notion when she mentioned that “having a disability is just one part of my life”. Thorny Rose, similarly, “speaks freely of having WS and is eager to share traits of the syndrome with others”. During our interview, Liz mentioned how music is “a connector within the WS community, but also a bridge to connect with other disabilities and other people”. Staff member Johann stated that music “changes our relationship fundamentally because we process music very similarly, in most cases. It connects us in a way that other topics or areas of life simply can’t”. I felt a strong sense of togetherness during my visit to BHMA and had the privilege of witnessing how, as Thorny Rose put it, “music brings everybody together” by affording young adults with WS the opportunity to interact and connect with others.Through engagement in music activities, these young adults are able to develop coping skills by being called up to adapt, deal with conflict, cope with negative emotions, be able to release tension, and draw on music as a lifeline. The ability to adapt to change and unforeseen circumstances is an important skill that these young adults acquire at BHMA through music, and it contributes towards their success, not only during music performances, but also in their vocation of choice. Thorny Rose emphasised that she feels that she “can’t humanly go a day without music” and that she “needs the music”. She explained this by saying that “going without music is like going without water. You can’t do it. You need water every day to stay hydrated”. For me, this must be one of the main motivations behind using music as a means for teaching life skills to young adults with WS. Music truly is an essential part of these young adults’ wellbeing. Sizzle also mentioned how music “helps all of us through the hard times” and that “music is what gave meaning in (her) life”. When young adults with WS learn the life skills required to adapt, deal with conflict and cope with negative emotions, and when music becomes their lifeline, they should be able to be hopeful about their lives and their futures. Through music, young adults with WS at BHMA are able to make sense of their lives and experiences and develop self-actualisation. The music activities at BHMA give these young adults the opportunity to “be who they can be” by developing their character, connecting with others, becoming emotionally intelligent, developing coping skills, learning to be hopeful, becoming independent and vocationally competent, all of which supports them in feeling good about themselves and ultimately living well.i.If young adults living with WS have the opportunity to learn through engagement in music activities  within a safe environment in which they are engaged and feel supported, appreciated and motivated, and feel that they belong and are competent , and;ii.if educators are willing to focus on the abilities of these young adults by putting their needs and abilities first (strategies);iii.then the young adults living with WS should be able to overcome various challenges (conditions inhibiting learning) and ultimately develop the life skills they need to live well (consequences).The theoretical proposition informing the discussion section of this article is:The lotus flower is used as a metaphor representing the theory presented in this article. This emerging theory was developed by integrating the findings emerging from data analysis with an extensive literature review. The theoretical components see , part 2 WS is defined by certain cognitive, personal, and social challenges ,64 that Mastnak and Neuwrithova  write thThrough data collection and analysis and through studying the scholarly literature, it became clear that engagement in music activities facilitates learning for young adults living with WS . This isSutela et al.  write abRobert Brooks  uses islA study conducted by Ioannidi and Samara  supportsIf young adults living with WS are given opportunities to engage in music activities within safe, supportive environments, and if parents, educators, and therapists put the needs and abilities of these young adults first, they should be able to acquire the life skills that they need to reach their full potential. Music activities could contribute towards these individuals developing the skills associated with expression, autonomy, socialisation, and independence . SimilarHewitt , when spThe theory presented in this article supports advocacy for the inclusion of arts-based methods in education at school and post-secondary levels. This study also draws attention to the importance of applying strengths-based strategies in teaching to meet the unique needs of students with (and without) divergences. Through the course of conducting this study, I was reminded of the importance of letting go of preconceptions and focusing on the abilities and needs of the young adults that we work with , while aWe need to acknowledge that the unique learning needs and the importance of music in the learning process of individuals from marginalised groups are not of lesser value. We also need to consider how we can learn from those who have different perspectives when planning curricula or designing our teaching and learning programmes. Researchers, therapists, educators, and policymakers need to advocate for accommodating young adults with WS’s unique educational needs. Consequently, more research is needed that focuses on the needs of young adults with WS through strength-based approaches that place music at the centre of the curricula. Through this study, I came to realise that young adults living with WS do not necessarily have a need to learn academic skills, but rather to engage in music activities, such as being part of various ensembles, individual music lessons, performing for family and friends on a regular basis, having recitals, and performing out in their communities. Through this engagement in music activities, these young adults have the opportunity to strengthen their character development, connect with others, develop emotional intelligence, develop coping skills, be hopeful, become independent, develop vocational skills, feel good about themselves, and live well. We need close collaboration between parents, educators, therapists, teaching institutions, and local businesses, as community engagement is a key aspect in how these young adults acquire life skills. Through engagement in various music activities within a safe, supportive learning environments, where strategies of “breaking the mould” and strengths-based abilities-first approaches are employed, young adults living with WS may be able to overcome various challenges and develop life skills associated with self-actualisation, connection, coping, independence, vocation, and flourishing.


It is expected that, by 2050, people aged over 60 in 65 nations will constitute 30% of the total population. Healthy aging is at the top of the world political agenda as a possible means for hindering the collapse of care systems. How can ICT/sensing technology meet older people’s needs for active and healthy aging? This qualitative study carried out in Italy and Romania in 2020 involved 30 participants: older adults, caregivers, and stakeholders. Based on a user-centered design approach, this study aimed to understand which requirements of ICT/sensing technologies could match people’s needs of active and healthy aging. Findings highlighted that ICT/sensing technology needs to focus on six major themes: (1) learnability, (2) security, (3) independence, empowerment, and coaching values, (4) social isolation, (5) impact of habit, culture, and education variables, and (6) personalized solutions. These themes are consistent with the Active Aging framework and the factors that influence perceived usefulness and potential benefits among older adults. Consequently, this study shows how well-known, but still unresolved, issues affect the field of information and communication technologies (ICTs) to promote active and healthy aging. This suggests that the reinforcement of the public health system, especially considering the pandemic effect, requires a concrete and formidable effort from an interdisciplinary research network. Population aging is a global trend; there were 703 million persons aged 65 years or over in the world in 2019, and this number is projected to double to 1.5 billion in 2050  for “helThe rest of the paper is organized as follows: the theoretical background summarizes the main aspects related to smart technologies that support older adults to live independently in their own environment and reduce dependence on professional caregivers. All key components of the active aging framework can be matched with the concept of technology for aging well under the umbrella term of assistive technologies (ATs), i.e., any device, product, or equipment that helps people to perform a task they would otherwise be unable to do, or that facilitates seniors’ daily lives . In factIn addition to physical and social environments, different geographical, social, and cultural environments influence the ability of older adults to maintain mental and physical activities, as well as social interactions and personal identities ,14. HumaIn addition to the value of aging in place and the possibility to monitor health status and security circumstances, social isolation is a growing concern among older adults ,21,22. MThe challenge is to create smart living environments that are safe and secure while also preventing hazards, disability, stress, fear, and social isolation . This neConsidering the scenario presented in this section, the current study attempts to answer the following research question: Which requirements of ICT/sensing technologies could match people’s needs for active and healthy aging? The aim was to collect and analyze the perspective of older adults, caregivers, and stakeholders in the field of care and technology, on a list of devices that promote healthy aging, thereby improving individuals’ independent lives. The qualitative thematic analysis of these visions was used to identify technology macro-requirements that better fit users’ needs and expectations.This study forms part of the European project “Safety of Elderly People and Vicinity Ensuring” (SAVE) , aimed at providing a technology platform to support the healthy aging of older adults suffering from age-related chronic illnesses or mild cognitive issues and/or disabilities. The SAVE system is a solution whose main goal is to support end users in staying in their familiar environments for as long as possible, exercising their autonomy and self-management, and avoiding social isolation. It also supports informal caregivers, such as relatives, in providing the necessary care while maintaining their professional and private life. The SAVE system is under development following iterative cycles based on the ISO 9241-210 human-centered design for interactive systems . At the This paper outlines the main findings of the first iterative session held in Italy at the National Institute of Health and Science on Aging (INRCA) and in Romania at the “Hand in Hand” Organization from Brașov, the Direction of Social and Medical Assistance (DASM) from Timișoara, and the Social Assistance Direction (DAS) from Brașov, aimed at defining how such ICT/sensing technologies meet the intended users’ needs of active and healthy aging.This study involved three types of participants: (a) primary end users, i.e., 65+ older adults suffering from moderate medical conditions or moderate impairments (mild dementia and/or disabilities); (b) secondary end users, i.e., informal caregivers (at the family and volunteering level); (c) tertiary end users, i.e., stakeholders including care providers, public social service, end-user organizations, and medical and nursing researchers. The inclusion and exclusion criteria of the study for the older adults were to (a) be more than 65 years old, (b) not suffer from major chronic diseases or severe disabilities (self-reported assessment), (c) retain sufficient mobility, for example, moving and maintaining body positions, handling and moving objects, moving around in the environment, and moving around using transportation (self-reported assessment), (d) receive occasional care from relatives or professional caregivers, (e) be able to complete the session, and (f) have at home a smartphone and internet access.Exclusion criteria were to (a) be less than 65 years old, (b) suffer from major chronic disease or severe disability (self-reported assessment), (c) have insufficient mobility (self-reported assessment), (d) receive long-term care from relatives or professional caregivers, (e) be unable to complete the session, and (f) not have a smartphone and internet access. Additionally, the only inclusion criterion for caregivers and stakeholders was being in a close relationship with older adults and/or providing care for them. According to the SAVE project activities, a staff composed of two psychologists (M.R. and A.A.) contacted 30 potential participants, informed them of the project objectives, methods, and timing, and underlined that participation in the study was completely voluntary, and that they could leave the study at any time without providing any explanation. Researchers then asked participants certain screening questions in order to check their inclusion characteristics. Nobody refused to attend, and participants signed a written document giving their informed consent for the processing of their data, in accordance with the GDPR 2016 and national legislation on privacy and data protection.Thinking aloud and focus group methods were used to collect data from the sample. The thinking-aloud method is a unique source of information on cognitive processes. The method consists of asking people to say whatever comes to mind about what they are doing, thinking, and feeling while solving a problem and analyzing the resulting verbal protocols for knowledge acquisition. This method is appropriate for studying the cognitive problems that people have in learning to use a computer system ,35,36,37If and what the video or storyboards evocated in their mind ;Why they found it interesting or otherwise .Each participant reported their first reactions to the following open topics during a 30 min discussion:Thinking-aloud and focus group discussions were transcribed and analyzed using the framework analysis method ,41,42. MAs shown in In accordance with the framework analysis, the thinking-aloud feedback and focus group transcriptions were associated with codes and the latter were merged into themes. Six themes emerged from the thematic analysis of both thinking-aloud and focus group transcriptions: learnability (Theme 1), security (Theme 2), independence, empowerment, and coaching values (Theme 3), social isolation (Theme 4), impact of habit, culture, and education variables (Theme 5), and personalized solutions (Theme 6).The skill to use/manage the smartphone would seem to be crucial for access to SAVE services” (G1_P1). For this reason, older adults reported that they preferred the smartwatch to the smartphone, since the former would seem to be more helpful and of more immediate use, especially if the person is alone, wants to monitor his/her physical state, and needs fast assistance: “I think the smartwatch may be more useful than the smartphone for an older person, especially when he/she goes out, and he/she is alone. In my opinion, older people are very stubborn; they are ashamed to feel weak and to communicate it to strangers. For this reason, in a time of need it can be useful to have the possibility of only pressing a button to receive help” (G1_P3), “If I have an accident, I would not be able to call for emergency help and, in this specific case, a sort of armband or smartwatch that monitors my vital signs is more useful than a smartphone” (G1_P5), and “If I have a memory lapse, I will also probably forget to turn to my smartphone to seek help” (G1_P1).The older adults group stressed the importance of learnability (Theme 1). The use of certain systems seemed to presuppose a basic knowledge of technology by seniors, as highlighted by an older woman: “Systems must be as simple as possible because technologies are always very difficult for us and we usually spend a lot of time trying to understand how technology is supposed to be used” (G1_P4). In this regard, they pointed out the difficulty that users often have with technology and the great importance of technological assistance that could help and reassure older people: “We need clear manuals and sometimes the help of our sons. Every activity related to instructions is really appreciated” (G1_P4).Moreover, older adults reported the desire to have a system that is able to understand if a person is sick or in difficulty without doing anything, thus reducing the effort to learn, as described by the following quotation: “Another theme that developed during the sessions was security (Theme 2). One of the older people explained that “For old people, help is also needed in the event of malfunctions of the electrical, plumbing or gas installation. They need trained, professionally correct people” (G1_P 10). In this sense, the safety of the person in their own environment is fundamental by using the accessories in the house: “Every time when I leave my house I check if the gas, water, or light is on 3–4 times. I am afraid of not only the expenses, but also to not blow anything in the house and surroundings” (G1_P12). Security should have the option “to find” your own house: “I think that a device that can guide us back home when we forget the road would help us a lot. I had the misfortune to get on another bus, and, because I left the neighborhood, I no longer recognized the streets” (G1_P13). Older people feel “safety” in terms of stability, recognition of objects, tasks, and needs: “From the SAVE system, I expect to not be afraid to stay at home and forget to turn off the gas, turn off the water, so I take care of myself, but also of others” (G1_P6). Moreover, older people want to use equipment that is easy to understand without the risks of installation and use: “I saw a gas detector on TV, not expensive, but maybe this SAVE system will be able to be installed in my house, especially in the kitchen” (G1_P12).I am an independent person and I want to be as active as possible. So, for me, technology must boost my activity and not only offer ‘protection’ against harm or accidents or ‘control’. I hate to be controlled”. There would seem to be a belief among older adults that technological systems are designed with a purely welfare, protection, and/or control function, without considering that certain devices could be especially useful even in the lives of older people who are still active and autonomous, as described by the following quotation: “I do not need such a system because I am independent” (G1_P4). Older adults, in fact, strongly stated their need to remain self-sufficient for as long as possible, and it is precisely in this sense that technology should promote activities, empowerment, and self-management. During the think aloud, this strong sentence was mentioned: “I’m afraid I’ll die alone at home, and no one will know” (G1_P8). Theme 4, social isolation, underlined the need to reduce this behavior: “Since I retired, I leave the house less, I meet less often with children or friends, and sometimes I do not want to become a burden for my family” (G1_P7). A networking issue was also emphasized: “The connection between older people, developed through various activities promoted by the system is very important for me. For example, online movies, news, online courses, concerts, etc. that could be watched from home, when I cannot get out the house” (G1_P7). Social isolation becomes a dangerous factor, if we do not detect it in time: “You have to think of this system as a detector of inactivity, for us any activity means utility, sense of an experience. Without them, we feel without rhythm, energy, or feeling to live” (G1_P6). Older adults also highlighted the importance of considering the link between the “habits” and “culture” variables and technology (Theme 5). Thus, it is not only older persons’ attitudes and interests in technology that should be considered, but also the environment in which they have always lived: “I think it’s important to consider the influence that the ‘habits’ and ‘culture’ variables could have on the use of technology. In my opinion, Italy’s aging population is not very adept at technology, while the situation is quite different in other European countries. I am not very attracted to tech devices” (G1_P2).Another strongly felt needs that emerged from this group is the need for independence, understood as an exaltation of the preservation of older people’s mental and physical capacities for as long as possible (Theme 3), as highlighted by P5: “Older adults are not so confident with innovations, even if they use a smartphone or tablet; some services are too difficult for them and, in this case, it is very stressful for a caregiver providing assistance” (G2_P17). In this sense, caregivers also speculated on the influence that “culture” and “education” variables (Theme 5) could have on the development of a positive user approach to technology. Moreover, they pointed out that, in the case of users with initial memory problems, needs become so complex that these needs would be difficult to match with technologies, in spite of the best learnable design: “I am not sure that my mother would be able to use the smartphone and the geo-localization function to come back home if she goes out and gets lost. She would most probably be able to phone me but not remember that she has an app that could help her. In a stressful situation, persons forget everything” (G2_P18) and “My wife has the first symptoms of dementia and what I see is that she forgets her smartphone everywhere, as well as other important things like keys and/or glasses. My concern is that this system may not be useful for her, not because the system isn’t interesting, but just because my wife will forget it” (G2_P19). They also stressed the need to have personalized solutions (Theme 6): “I think that there is a need for systems that are designed around the specific needs, intentions, and barriers of users. It is better to have fewer but very well personalized services” (G2_P17). Caregivers highlighted the importance of older people remaining independent (Theme 3) and recognized in technology a way to maintain their wellbeing, as well as cognitive and physical autonomy. For example, cognitive exercises and/or games could be useful in supporting older adults in stimulating and maintaining their skills: “If I consider my father, I really want him to stay as active as possible and my concern is that this kind of service could lead him to becoming passive and less attentive to his daily activities” (G2_P15) and “My mom […] forgets things, events, appointments and so on. The system might be beneficial to her, but my wish would be for the system to support her in maintaining her capabilities, maybe with some cognitive exercises or games” (G2_P18). Regarding Theme 2, security, the caregivers agreed: “Using such systems have advantage to know almost all the time where the older people is, and the most important you can contact them in real time, without any obstacles. Being able to learn from the system how to return home using your intelligent system is a huge progress for personal security” (G2_P20). The benefits are not only for the professional caregivers but also for the family caregivers, who were pleased with the safety that the system provided. Older people are involved in fewer activities compared with other populations; one of the reasons could be retirement or lack of friends: “Such systems should have an application for involving older people in different activities  to reduce the level of ‘social isolation’ and to prevent any risky situation for them” (G2_P21).Caregivers highlighted the importance of learnability (Theme 1). A system should also be easy for older people without having to learn new skills. Such learning is often complicated and energy-consuming not only for users but also for careers, who need to provide technological help and assistance: “Thinking of older people, we recognize the fear regarding their security in their houses, on the street, or during their walks. We never know what could happen during this time, maybe it is a good idea to have sensors that are able to detect critical situations”. This group also underlined the importance of developing systems that promote older people’s empowerment and self-management (Theme 3) and not just provide a passive monitoring of the physical state of users: “It is important that such devices empower users in self-management by making sure users’ self-responsibility is retained” (G3_P23) and “This means being active and not passive or under control” (G3_P25). Moreover, it is also important to have a motivational coach to support users in interacting with the system, providing them with strong encouragement when they act in the right way, e.g., when they use the system daily: “Such devices can play the role of motivational coach: it is not enough for my phone to remind me to have a walk of at least 5 km a day; I need to stay motivated to do it” (G3_P24). The value of personalized solutions (Theme 6) was recognized by G3_P27: “It is important to share knowledge on how technologies can help users to be active and independent in the progressive process of aging. If certain technology is not useful at this current point in time, it could become significant later when age-related conditions arise. So, for the time being, I can just keep myself informed for the near future. It is a way to acquire awareness on personalized solutions”. Stakeholders stated their concerns about the most critical situation of “being alone at home” (Theme 4). G3_P30 summarized the general thought as follows: “We never know what their activities are in their homes, and, without any feedback system, our options are limited. I am convinced that, if we involve them in different activities, we will reduce their fear; they will be in direct connection with them and share with us, friends, or caregivers their fears, sensations, and feelings; we will be able to adapt the system to their needs”.With regard to the stakeholders, they also stressed the importance of learnability (Theme 1) and security (Theme 2) when introducing new devices among older adults. For example, G3_P29 said that “This study was aimed at collecting and analyzing which requirements of ICT/sensing technologies could match people’s needs of active and healthy aging. Thinking-aloud discussions with older adults and caregivers, as well as a focus group with stakeholders, were held for this purpose. As shown in With regard to Theme 1, results showed how important it is for older people to be able to learn and use technological devices to reach and achieve some desirable outcomes with as little cognitive effort as possible. The design of most electronic household appliances, such as the buttons on control panels and font sizes, colors, and touch screens, are not age-friendly, and the instructions are complicated, without the full details, and hard to follow. For this reason, older adults may feel confused or frustrated when using technology . This usAs emerged from Theme 2, all three groups agreed that technological devices should provide a sense of confidence and security for older adults, which would enable aging in place. Starting from the concept of a smart home, i.e., a residence equipped with technologies that include sensors, wired and wireless networks, and intelligent systems, over the past decade, smart home technology has increasingly targeted people having reduced capabilities due to age or disability. It was initially focused on increased security, convenience, and energy savings, whereas, recently, the scope of its use has gradually varied to enhance the overall quality of life. Smart homes increase domestic comfort, convenience, security, and leisure, as well as reduce energy use through optimized home energy management ,66. Lee With regard to personal determinants, as discussed in Theme 3, older adults, caregivers, and stakeholders stressed the need for a technological system capable of protecting the vulnerabilities of users, as well as to support them in maintaining their abilities and to make them feel as active and independent as possible. Stakeholders also underlined the value of empowerment and self-management to promote wellbeing. Several studies ,72,73,74With regard to Theme 4, results showed that the contribution of technological systems toward improving the quality of life for older adults should also focus on social and fun aspects. Home features hardwired with smart communication technology can be used to encourage their social connectedness and prevent those living independently from feeling isolated. Previous studies ,21,22,24With regard to contextual determinants, as discussed in Theme 5, older adults and caregivers suggested looking carefully into the influence of the “habits”, “culture”, and “education” variables on technology acceptance. This involves not only considering older people’s attitudes and interests in technology, but also their surroundings ,76,77. SIn closing, another significant aspect that emerged from the results is the push for personalization (Theme 6), since a “one size fits all” approach is not suited to a diverse set of users . The neeDespite the benefits of collecting and comparing these different perspectives, the specific national centrality on Italy and Romania, as well as gender disparities in the sample size, could be seen as bias and significant limitations that do not allow for the generalization of results. Furthermore, the sole use of qualitative methods is also a limitation, whereas a mixed-methods approach could have guaranteed a broad understanding of thoughts and emotions toward the use of ICT/sensing technology to promote older adults’ healthy aging. Focus groups are the qualitative method most used in studies on the use of technology to grasp the perspectives of respondents regarding the usability and acceptability of the artefacts . Since tMoreover, this study was performed in March–May 2020 in between the quarantine restrictions imposed by the Italian and Romanian governments after the spread of COVID-19. The use of physical distancing methods to reach users by phone or a video conferencing platform could have influenced the sample’s natural responses. The recent coronavirus pandemic has forced many governments to enforce physical distancing measures, which has unfortunately become social distancing, in order to contain the infection. This has introduced further complications to health and wellbeing, especially among older adults . In thesThe pandemic opened great opportunities and implications for the design, development, and use of information systems and technologies in the public health system, especially in response to the changing needs of the aging population worldwide. However, health and care systems are facing increasing challenges today. Significant improvements are urgently needed to reach high-quality, efficient, accessible, health-promoting, people-centered, resilient, health and care systems especially for older adults. For example, this study identified these six pillars on which action can be taken from the different points of view of primary, secondary, and tertiary end users. Older adults, caregivers, and stakeholders identified six important features that match the users’ need related to learnability (Theme 1), security (Theme 2), independence, empowerment, and coaching values (Theme 3), and social isolation (Theme 4). The key solution could, therefore, be to enable close collaboration between interdisciplinary research networks such as medical scientists, technology developers, stakeholders, and older adults, as well as their formal and informal caregivers. This could facilitate the way forward toward building a common vision to set shareable objectives and to foresee the expected impacts as a matter of urgency in this time of societal transformation.By analyzing data emerging from thinking-aloud sessions with older adults and their caregivers, as well as the focus group with stakeholders in technologies for aging well, this study discussed six important features that ICT/sensing technologies could match to support the needs of active and healthy aging: the challenge to assure the learnability of technologies for active and healthy aging (Theme 1), the significant impact that security worries have in the perspective of older adults and their caregivers (Theme 2), the added value to promote independence, empowerment, and coaching to maintain effectively an active aging perspective among older adults (Theme 3), and the avoidance of social isolation (Theme 4), while always taking into consideration the value of habit, culture, and education variables (Theme 5), as well as the request for personalized solutions (Theme 6). So far, these are all well-known, but still unresolved, issues affecting the field of ITCs to promote active and healthy aging. This suggests that the reinforcement of the public health system, especially considering the pandemic effect, requires a concrete and formidable effort from an interdisciplinary research network made up of medical scientists, technology developers, and social and business innovators, as well as the direct engagement of older adults and their formal and informal caregivers. The challenge facing demographic change is pushing the innovation enabled by digital solutions; however, there is a concrete need to understand the triggers and enablers that support the deployment of digital technologies.


Chronic feelings of emptiness are significant in the lives of people with Borderline Personality Disorder (BPD). Feelings of emptiness have been linked to impulsivity, self-harm, suicidal behaviour and impaired psychosocial function. This study aimed to understand the experience of chronic emptiness, the cognitions, emotions and behaviours linked to emptiness, and clarify the differences between chronic emptiness and hopelessness, loneliness and depression.n = 15) with BPD and used a template analysis qualitative approach to understand their experiences of chronic feelings of emptiness.This study interviewed people (Chronic feelings of emptiness were experienced as a feeling of disconnection from both self and others, and a sense of numbness and nothingness which was frequent and reduced functional capacity. Feelings of purposelessness and unfulfillment were closely associated with emptiness, and most participants experienced emptiness as distressing. Responses to feelings of emptiness varied, with participants largely engaging in either impulsive strategies to tolerate feelings of emptiness or distracting by using adaptive behaviours. Most participants distinguished chronic feelings of emptiness from loneliness, hopelessness, dissociation, and depression.Feelings of chronic emptiness are an important and challenging symptom of BPD which require clinical intervention. Strengthening identity, sense of purpose and vocational and relationship functioning may reduce the intensity of emptiness.The online version contains supplementary material available at 10.1186/s40479-021-00164-8. Borderline personality disorder (BPD) is characterised by pervasive distress and dysfunction in self and interpersonal spheres , 2. WithChronic feelings of emptiness are significant to the conceptualisation, course and outcomes of BPD. Theoretical models have linked the experience of chronic emptiness to deficits in self- and object-representations, resulting in a diffuse or unstable identity and disconnection from other people –7. BiosoAlthough research into chronic emptiness is beginning to develop an understanding of the aetiology, features, and impact of chronic emptiness in BPD, there are still important gaps in the field. Firstly, there remains no consensus on the phenomenological experience for people with BPD. While chronic emptiness emerged as a theme of life stories for women with BPD , there hTo address the gap in the research, this research aims to capture the phenomenological experiences of chronic emptiness for individuals with BPD. Specifically, the research aims to identify common experiences of chronic feelings of emptiness for people with BPD, understand cognitions, emotions and behaviours linked to emptiness, and clarify the differences between chronic emptiness and related experiences.Selective sampling methods identified participants suitable for this study from those enrolled in a larger ongoing longitudinal study, which is described elsewhere . In brieParticipant’s interview included administration of the BPD component of the Structured Clinical Interview for DSM-5 (SCID-II) and a semi-structured interview regarding common experiences, cognitions and behaviours and related experiences of chronic emptiness  to 6 .The SCID-II  was utilA template analysis approach was utilised for qualitative transcripts, underpinned by a critical realism ontological approach which explores lived experiences to interpret and make meaning of underlying mechanisms or phenomena . TemplatSD = 12.35, range = 24–63 years), and 80 % of the sample were female (n = 12). All participants had sought treatment from a psychologist, psychiatrist or both in the past two years. The average rating of chronic emptiness over the past fortnight was 3.4 . Demographic and clinical information is provided in Table In the final sample of 15 participants, the mean age was 37.42 (n = 14) currently met criteria for five or more symptoms of BPD. Participants most commonly endorsed abandonment fears (93.3 %), affective dysregulation (93.3 %), identity disturbance (80 %) and chronic emptiness (80 %). One participant endorsed three symptoms of BPD, however had previously met threshold for a diagnosis and three participants noted they did not currently experience feelings of chronic emptiness. These participants were able to reflect on their past experiences.Following administration of SCID-II, 93.3 % of the sample  of chronic emptiness were all single, not currently employed and had an average age of 50 years. The four participants who endorsed the least severe emptiness in the past fortnight were all in a relationship or married, and were in part- or full-time employment or caring for others. The average age of these participants was 31 years.Typically, participants found it difficult to articulate the experience of chronic emptiness to the interviewer, however, many participants were able to think of a metaphor for how chronic emptiness feels – see Table “Numb. It reminds me of a dead leg, kind of. Like, the sensation of the fuzziness is there.” #249,020 remarked “It’s like being in a dark room. And you’re just sitting in the middle of a completely dark room. And there’s nothing.” Participants likened feelings of chronic emptiness to a feeling of disconnection from themselves. This included feeling they have no identity and feeling like their identity is unstable. For participants who described emptiness as an absence of self, they reported it was a sense of not feeling like they are a person. #259,029 remarked “It’s like a sense of not-being, like because I’m no being, a sense of no body… to me, identity means you’re a person, to me emptiness is not a person. When I feel like there’s some emptiness I have – I’m not a person. I don’t feel like I’m a person.” Participant #259,004 described emptiness in a similar way, “Like there’s nothing, there’s nothing there, that there’s no, like, there’s no emotion, there’s no, there’s no me… Yeah. Emptiness I just feel like there’s nothing left of me” Similarly, a participant reported their feelings of emptiness were linked to a diffuse sense of identity, and related this to feeling like a chameleon who changes colours according to the situation.Participants largely defined feelings of chronic emptiness as a sense of nothingness or a feeling of numbness. #219,132 “[chronic emptiness is] disconnection from people. It’s like, I’m looking, I’m an observer as opposed to participant”. One participant noted that chronic emptiness occurs when they are “not connecting with people, and being, like, kind of − I have got a tendency to just, like, stay in my room and, just, like, avoid the world. So, if I’m kind of doing those − like, if I’m kind of doing negative behaviours, I find that the emptiness comes” . Other participants noted that chronic emptiness often arose when they were experiencing interpersonal distress – such as comparing themselves to others or feeling like no one cared about them, or interpersonal dysfunction – including conflict in relationships.Some participants also described chronic feelings of emptiness as a sense of disconnection from others, though this was described less often than a disconnection with self. Participant #259,029 remarked “purposeless kind of living. It’s just your kind of very robotic and very, like – there is no meaning or purpose” . For some participants, this feeling of purposelessness was characterised by low agency, and a lack of self-direction, values and goals. #259,049 stated “I didn’t really know what to do; going for jobs, application processes but, you know didn’t go through… I was sort of doubting or questioning my life at that point.” While #259,090 remarked “I just felt that I was going through the motions of life I suppose and didn’t actually, um, enjoy life at all for a little time.” This sense of purposelessness often culminated in a feeling of unfulfillment – participant reports included “not living, a life of fulfilment… there’s something missing, I’m not living the life that I want to live… why… why, what am I doing right now, like why… What am I doing with my life that is fulfilling me right now?” , “I don’t feel like there’s anything worth getting out of bed for”  and “questioning the whole point of life and existence” .Chronic emptiness was often related to cognitions and emotions of purposelessness and unfulfillment. One participant reflected emptiness resulted in a “come and go” . Participants found it difficult to identify what helps to alleviate emptiness in the long-term, but had developed short-term preventative and coping strategies. One participant likened the experience of chronic emptiness to the descriptions of Dementor’s in Harry Potter . Participants discussed the nature of emptiness as being chronic and difficult to alleviate. One participant noted they did not know what it was like to not feel empty anymore, and others reported a feeling of being stuck with nothing changing. Participants also described emptiness as a frequent experience but noted that it was not always constant and will ir left; ). She re“it can just be, like, any random day, um, it doesn’t have to be a trigger or anything… I can just wake up feeling like that.” Similarly, other participants reflected chronic emptiness arose when they were not making an effort to connect with the people close to them, when they were sitting in traffic and most commonly following the completion of daily activities and prior to sleep. Interestingly, several participants commented on employment functioning as a distraction from the feeling of emptiness. One participant reported “Even though I might, um, be doing quite well, just coming back to myself at the end of the night and then just being in my own, um – in my own thoughts… throughout the day I’m quite okay because I do have that, um – I have that sense of being able to distract myself through other – other, um, areas, either work, um, gym, my friends or my family… It’s when I get home at the end of the night” .Participants reported chronic emptiness most often occurred when they were not busy or distracted. One participant #259,004 said “emptiness – it’s just, like, it’s just, yeah, it stops you dead in your tracks, you know… just stops you and you don’t want to go out the door.” . Other participants reported “I didn’t do much in those two years. Like, I did not have much of a life, it was quite a blur”  and “with the emptiness I find it really hard to function” .A further theme that emerged was reduced capacity or inability to function when experiencing emptiness. Participants often reported this when differentiating chronic emptiness from similar experiences. One participant noted that “if it’s like way too intense, I will just shut it down because I can’t deal with it in that moment”. Typically, participants spoke about wishing they could not feel empty and trying to create feeling when they do experience emptiness. These participants indicated that the experience of chronic emptiness was distressing for them, and they actively try to avoid the experience. Some participants, however, reported that they use chronic emptiness as a distress tolerance strategy. They spoke about wanting to feel empty inside rather than feel an intense emotion and out of control. This seemed to represent an active choice to inhibit intense emotion, as #219,065 reported  Participants discussed a wide range of ways in which they try to prevent chronic emptiness from occurring, and methods for coping and alleviating chronic emptiness. Typically, similar strategies were employed to prevent, cope with, and alleviate chronic emptiness.“If I’m feeling empty and I’m feeling like, oh well, I just don’t want to sit in this space, I just want something to counteract that, so I’m just going to do something impulsive.” These participants also endorsed avoidance of cognitions associated with emptiness, however reported this avoidance can also result in impulsive or unhelpful behaviours. For individuals who engaged in maladaptive behaviour, they more often reported they had not thought about how impulsive behaviours may be an attempt to alleviate feelings of chronic emptiness prior to the interview, but when prompted felt that they were linked.Maladaptive strategies included impulsive behaviours and rumination on thoughts of purposelessness and unfulfillment. Participants spoke about generating alternate affects to emptiness through impulsive behaviours such as self-harm, #219,065 “[I] just involve myself in everything just to keep my mind distracted”. However, these participants often noted that avoiding cognitions was only a temporary solution. The distinguishing feature of adaptive coping was awareness of the emotion, which appeared to provide an opportunity to choose a coping strategy rather than engage in an immediate reaction.For participants who had more adaptive methods of preventing, coping and alleviating chronic emptiness, the most common method of tolerating and alleviating chronic emptiness was through utilising behavioural activation skills. These participants spoke of an active choice to engage in a different behaviour to alleviate emptiness. Several participants reported that when these behaviours are unsuccessful, they resort to sleep in the aim of ‘resetting’ themselves. Cognitively, some participants reported they choose to ignore or delay focusing on cognitions and emotions associated with emptiness until it abates, participant #219,112 remarked “depression is more thinking and emptiness is lack of thinking… your mind is not processing it; it’s just empty” while participant #219,132 reported “depression, um, to me, is an emotion. Um, to me, it is sadness… whereas emptiness is nothing… emptiness is so neutral”. Similarly, participant #229,110 remarked “No, it is different, depression is just you feel like you’re in a… whirlpool or a crevasse and you’re just falling and, there’s no getting back. Emptiness is just nothing.” Interestingly, some participants reflected that it was more difficult to function when feeling empty compared to when feeling depressed, possibly indicating that the absence of any thought or feeling results in feelings of anhedonia and amotivation beyond those feelings present in depression. Participants also distinguished between chronic emptiness and feelings of loneliness. Several participants noted that loneliness and chronic emptiness can coincide, and loneliness can often precede feelings of emptiness inside. In a similar way to depressive experiences, a distinguishing feature of loneliness included that “loneliness, like it is an actual feeling, like − and emptiness is just like lack of feeling” , and participants reported they could still function when feeling lonely. Participants attributed feelings of loneliness to a lack of social connections, while chronic emptiness was characterised by a disconnection from both self – goals, ideas, and values – in addition to disconnection from other people. The disconnection from others was not necessarily due to a lack of relationships, but rather “not feeling like you’re connected” . Further, participants indicated that loneliness could be alleviated by distraction or social connection, whereas emptiness was more debilitating – one participant reflected “emptiness is like, what I feel about myself… loneliness can be cheered by meeting up with people”. Some participants spontaneously linked the experience of chronic emptiness to hopelessness. One participant reported chronic emptiness and hopelessness were the same experience, however, other participants noted that chronic emptiness is an absence of feeling while hopelessness is “the dread feeling” . The common theme among the comparisons between chronic emptiness and associated experiences was that feelings of emptiness were characterised by an absence of thoughts and feelings, rather than the presence of distressing experiences. Interestingly, four participants also spoke of the differences between emptiness and dissociation. They reported that they disconnect or ‘zone out’ when experiencing feelings of emptiness. This was described as a dream-like state, not being in tune with surroundings, and not paying attention. These participants reported it was similar but distinguishable from dissociation, as #259,004 said “I still know that, like, time’s passing, and afterwards I can tell you what I did during that time, but I’m still just sitting there, and I’m just not paying attention, like I’m just zoned out, rather than dissociated.”When asked to reflect on if chronic feelings of emptiness were distinguishable from experiences of depression and loneliness, most participants identified emptiness as a distinctive experience. Participants indicated the distinguishing feature was that depression included distressing feelings and cognitions, while emptiness felt like an absence of everything. Participant #219,075 stated This study aimed to understand how individuals with BPD experience the feeling of chronic emptiness. This included clarifying the nature of emptiness, identifying common experiences, cognitions, emotions and behaviours linked to chronic emptiness and understanding the differences with associated constructs. Chronic emptiness was largely reported as a unified construct, with most participants describing a sense of nothingness and numbness that represents a feeling of disconnection with self and others and resulted in feelings of unfulfillment and purposelessness. These findings echo descriptions of emptiness as characterised by low positive affect which creates significant distress rather than intense negative affect , 27. FeeFeelings of chronic emptiness in this sample seemed to stem from a disconnection from self and others. In relation to a disconnected sense of self, participants noted that chronic emptiness arose from feeling like they had no identity, that their identity was unstable and difficulties with self-direction, values and goals. This supports previous theoretical work that considers emptiness in part as a reflection of disturbed self-representations , 28, 29. Participants also discussed a disconnection from others as a source of chronic emptiness, which often occurred in the context of interpersonal distress and dysfunction. Theoretically, this may relate to impaired other-representations, experiences of invalidation and difficulties with internalising positive social experiences , 9. A feFor most participants, chronic emptiness was experienced as distressing and they attempted to prevent, tolerate or alleviate chronic feelings of emptiness. Participants who had not previously considered the link between emptiness and impulsive behaviours prior to participation in this research often attempted to relieve emptiness by engaging in maladaptive and impulsive coping strategies. This supports previous literature that hypothesised emptiness feels intolerable and people engage in impulsive behaviours to generate alternate affects to emptiness , 13, 15. While most participants reported they found feelings of emptiness distressing, some participants noted chronic emptiness could be brought on intentionally to tolerate distress, in an attempt to regulate intense emotion and prevent behavioural dyscontrol. This may be important in clinical practice for clinicians to discern how individuals relate to feelings of chronic emptiness and the distress associated with emptiness.Most participants differentiated between feelings of chronic emptiness and associated constructs like loneliness, hopelessness and dissociation. The distinguishing factor was that chronic emptiness is an absence of emotion compared to other experiences which have a visceral feeling. However, participants noted that emptiness and loneliness often coincide which is unsurprising given that the experience of loneliness for people with BPD is prevalent and persistent . It is pThe majority of participants indicated their experience of chronic emptiness could be differentiated from the experiences of depression. While a meta-analysis reported support for a BPD-specific depression characterised by anger, hostility and self-criticism, there were no studies that compared feelings of emptiness in BPD and depressive disorders . This stThis study has several limitations. Participants had all received psychological intervention for BPD within the past two years and not all participants were experiencing severe levels of chronic emptiness at the time of the interview. While this enabled some participants to reflect meaningfully and articulately describe their past experiences, it is possible that chronic emptiness is experienced differently for those who do not receive treatment or who are more acutely symptomatic. Similarly, the results of this study were dependent upon participants being able to articulate an internal experience most commonly defined as an absence of feeling. This was a challenge for some participants and may have resulted in a reliance on participants who were able to effectively articulate their experience of emptiness – most often those who were experiencing emptiness less severely or speaking about past experiences of emptiness. Interview questions directly asked about the link between identity and chronic emptiness, however did not further extrapolate between different forms of identity such as social- and self-identity. As with all qualitative research, interpretation of the participant interviews is influenced by researcher assumptions and expectations which may lead to researcher bias .Future studies could investigate the role of social cognition deficits in identity and chronic emptiness and explore emotion awareness and the impact on behaviour in BPD. Also, more knowledge is required to better understand the differences between people with BPD who actively try to inhibit their emotions by creating a feeling of emptiness, versus those for whom chronic emptiness is unavoidable and distressing. Similarly, future research could further investigate the similarities, differences and relationship between dissociation and chronic feelings of emptiness. While participants in this study provided a range of short-term measures to prevent, tolerate and alleviate chronic feelings of emptiness, the field may benefit from studies trying to understand how to reduce the severity and impact of chronic emptiness over the longer-term for people with BPD. As chronic emptiness is one of the last symptoms of BPD to resolve , researcThis novel study found that for people with BPD, chronic emptiness is experienced as a sense of nothingness and numbness that reflects a feeling of disconnection from both self and others. It is associated with feelings of unfulfillment and purposelessness. Chronic emptiness is a frequent experience that significantly limits the functional capacity of people with BPD and is distinguishable from loneliness, hopelessness, dissociation, and depression. It is possible that reduction in identity disturbance and improved vocational and relationship functioning may reduce the intensity of chronic emptiness. It is difficult to alleviate, however there are a range of strategies people with BPD engage in to prevent, tolerate and alleviate chronic emptiness which may be harnessed for future interventions.Additional file 1.