Littérature scientifique sur le sujet « Giovani caregiver »

5546 Background: The family caregiver (FCG) has become a hot topic. This figure among head and neck cancer patients is still largely un-investigated; aim of our study was: 1) to describe in a more detailed way the role of FCG, 2) to evaluate quality of life (QoL) and psychological distress of FCGs and patients 3) to investigate relationships between FCG’s wellbeing and patient’s QoL and emotional pattern. Methods: Sixty couples of patients and their caregivers were enrolled in this observational cross-sectional study between April 2007 and May 2011 at 1st ENT Division, 2th Medical Oncology Division and 2th Radiotherapy Division of San Giovanni Battista Hospital of Turin. Inclusion criteria were: diagnosis of SCC, advanced stage (III-IV), completion of curative treatment and no evidence of disease at the enrolment. Psycho-oncological assessment was performed using: Distress Thermometer (DT), Stay-Trait Anxiety Inventory Manual in Y1 and Y2 form (STAI Y1-Y2), Beck Depression Inventory (BDI) and Montgomery-Asberg Depression Rating Scale (MDRS), EORTC-QLQ-C30 and Head and Neck-35 module and Caregiver Quality of Life Index-Cancer (CQOLC). Results: Patients: state and trait anxiety are 46,7% (STAI Y1 mean value 40,2±10,2; cut-off 40) and 36,7% (STAI Y2 mean value 36,7±8,2; cut off 40) respectively; self reported and clinician rated depression are 31,6% (BDI mean value 8,2±5,3; cut-off 9) and 48,3% (MDRS mean value 7,9±5,9; cut-off 6) respectively.CGs: state and trait anxiety are 50% (STAI Y1 mean value 42,5±9,9; cut-off 40) and 41,7% (STAI Y2 mean value 39,1±8,7; cut off 40) respectively; self reported and clinician rated depression are 28.3% (BDI mean value 7,3±4,7; cut-off 9) and 41.7% (MDRS mean value 7,6±5,8; cut-off 6) respectively.Data analysis underlined a positive association among emotional scales of patients and caregivers. Patients’ psychological aspects are negatively associated with caregivers’ QoL and vice versa. Conclusions: Anxiety and depression are often present in FCGs and cured HNC patients. Long term patient's QoL is the result of a frail balance between FCG and patiet emotional and psychological distress. A psychological support for FCG could improve patient well-being.

Siamo soliti pensare che emotiva e cognitiva siano dimensioni dell'esistere tra loro disgiunte. In realtà, gli studi di matrice evolutiva spiegano come la nostra affettività sia indissolubilmente legata alla cognitività, dal momento che la "forma" che le riposte fisiologiche e motorie della persona assumono all'interno di un contesto sociale - possiamo chiamarla emozioni -, altro non è che una valutazione cognitiva degli stimoli provenienti dal contesto dipendente, specie al principio della vita, dal caregiver di riferimento. In un tempo in cui in Occidente la crisi delle agenzie educative ha raggiunto una fase oramai emergenziale e assistiamo a un investimento spesso improduttivo sulla dimensione cognitiva dello studente, l'articolo offre una cornice teorico-metodologica per comprendere le ragioni per le quali la scuola dovrebbe più intenzionalmente cogliere la dimensione emozionale dell'insegnante e del curricolo e coltivare nello studente quella fiducia interiore fondamentale per ri-avviare le esplorazioni appassionate nelle aree del sapere che possono svelare le vocazioni personali di ognuno e al contempo prevenire condizioni di disagio giovanile o più gravi momenti di "vuoto" esistenziale dinanzi a traumi massivi come la pandemia e l'attuale emergenza bellica.

Photo by Matteo Vistocco on Unsplash ABSTRACT This paper explores a way to ensure a person’s autonomy and legacy are preserved during the experience of dementia due to Alzheimer’s disease. Due to the profound effect the disease has on memory, the “person of the lifetime” (the person’s past experiences and their future aspirations prior to disease progression) becomes seemingly disconnected from the “person of the moment,” or the person experiencing memory loss. Thus, directives are important to recognize and maintain continuity of person. Yet, a person’s “legacy,” based on the person’s values and philosophy, can serve as a bridge between those two identities. Ultimately, people with significant memory loss from Alzheimer’s disease are unable to secure their own legacy due to the diminishing ability to make autonomous decisions as the disease progresses. A legal system that codifies the ability to create a requirement to honor ADs and research advance directives (RADs) can best secure the autonomy of the person of the lifetime, and thus the person’s legacy, of the person Alzheimer’s disease. INTRODUCTION At present, there is no effective treatment or cure for Alzheimer’s disease’s cognitive decline and ensuing dementia. While the definitive diagnosis is confirmed only after death via brain autopsy, Alzheimer’s is diagnosed by symptoms and scans.[1] Over the course of an eight-to-twelve-year post-diagnosis period, people progressively lose memory and cognitive functions in an irreversible pattern.[2] Because Alzheimer’s disease remains incurable despite significant scientific research into its causes, its biological qualities,[3] and its symptoms, many people with Alzheimer’s disease may wish to document care choices in advance while they have capacity to do so. Those experiencing early-stage Alzheimer’s disease or mild cognitive impairment wanting to determine the best path for their private and public future life’s agenda must have the legal tools needed to make sound plans for their future. l. Preserving Legacy: The Benefits of Advance Directives for People with Alzheimer’s Disease A legacy is the part of a patient that will persist into the future, even after death. Autonomy can be increased by permitting Alzheimer’s patients to document their legacy and wishes prior to significant cognitive impairment. Whether a legacy is in others’ memories of personality traits or is something concrete like a business, named building, charity, or a cookie recipe, many people with Alzheimer’s disease wish their person of a lifetime to be remembered. Many do not want to be remembered only as they are in the end of life, or as the cognitively impaired person of the moment. I argue that the best legacy for oneself is defined by one’s own autonomy and his or her most personal, private philosophy and values. When third-party caregivers or healthcare workers seek to impose their views of the best interests on the person of the moment, they may be disrespecting that person’s legacy interests. Having an AD that the caregivers must respect can help all stakeholders make decisions with moral legitimacy. The preservation of the person of the lifetime can be maximized by focusing on both past and present life experiences. Significant memory loss from Alzheimer’s disease interrupts the usual relationship between the person of the lifetime and the person of the moment, who may understand the present but may experience near-complete short- and long-term memory loss.[4] Reconciling these two “personhoods” in one person in a formal process best serves the legacy for Alzheimer’s patients by assessing various perspectives and providing a decision-making framework for caregivers and stakeholders. I assert that the autonomy of the person of the lifetime deserves equal or more weight than a decision-making third party when the person of the moment lacks capacity to make a healthcare decision. This argument is compatible with Samuel Dale’s argument that “precedent autonomy morally authorizes ADs when dementia renders patients medically incompetent because it respects their dignity as persons, not merely pleasure-seeking creatures.”[5] Dale relies on Dworkin’s view that critical interests should carry more weight than “experiential interests.”[6] The pursuit of critical interests gives meaning to human life and is encoded in ADs to represent the whole person.[7] Nevertheless, the person of the moment has value and can enjoy the pursuit of happiness. Treatment for Alzheimer’s disease focuses on comfort and happiness as a driver for the patient’s best interests, thus attending to the needs of the person of the moment while balanced with the interests in an AD if it conflicts, to not damage the legacy. The person of the moment needs care to avoid pain and arguably to achieve some happiness, while simultaneously relying, insofar as still possible, on the person of the lifetime to obtain peace and contentment.[8] Respecting Alzheimer’s ADs is consistent with the strong individualism inherent in the US. The rule of law attempts to maximize autonomy and theoretically to ensure individual rights.[9] In the US and other liberal democracies, recognizing the power and inalienable rights of the individual involves securing the right to make one’s own decisions. Yet, as with other individual rights, there are situations where ADs are not absolute and where laws limit their full effect. Some statutory and regulatory restrictions make it legally difficult to honor ADs, especially with respect to nutrition and hydration directives.[10] Arguably that is a poorly considered approach; notably, at least one scholar, Corinna Porteri, argues that “statutes that disregard or invalidate ADs are discriminatory against the life lived.”[11] ll. The Benefits of Research Advance Directives for People with Alzheimer’s Disease The scientific research necessary to better treat people who have Alzheimer’s disease requires engaging patients in research. A major bioethical question immediately arises: how can we obtain informed consent from a person unable to weigh different options and risks/rewards properly? Research advance directives (RADs) could allow advanced consent for participation in research and could place limits on the consent.[12] People who have Alzheimer’s disease should be able to express their desires in ADs during the early stages or before diagnosis. Directives must be able to allow people to express a desire to join clinical trials. The National Bioethics Advisory Committee in the US recommended RADs,[13] which allow people to join studies when the treatment or medicine would benefit them, and possibly when it would benefit the larger public and has some potential to benefit the person.[14] Porteri asserts that RADs should include consent based on the type and degree of risk, as it is impossible to predict the types of treatment or the anticipated side effects in future studies.[15] Ultimately, the person’s autonomy of a lifetime should take precedence because further research offers patients hope for both their legacy and the legacies of others. Still, there may be cases in which the societal interest in protecting the person takes precedence. Societal interests may include preserving dignity and avoiding suffering. It may be necessary to safeguard people by limiting participation to low-risk studies and requiring additional consent from a proxy or caregiver. RADs are appealing because they guide decisions, as do ADs; their unique appeal that is specific to RAD as part of AD is that the certainty of a permanently preserved legacy of valuing medical research in writing could take precedence over the uncertainty facing the person of the moment. At present, these are still tenuous grounds, requiring philosophical and other solutions. A moral question arises regarding the ability to change one’s mind after the threshold established for ADs and RADs takes effect. How can it be known if patients would have changed their minds given current circumstances and the often-lengthy progress of Alzheimer’s disease? If a person wanted to withdraw an AD or RAD and expressed an unwillingness to engage in research, there is a moral argument that the person of the moment must not be deprived of a right to withdraw. By limiting the AD and RAD to treatment and research decisions after significant memory loss occurs, those with mild cognitive impairment certainly would decide about research for themselves, possibly with the input of family, friends, or doctors. Early diagnosis permits time for the patient to alter ADs before they develop significant memory loss. When patients understand the progression of the disease, their autonomous decisions regarding their care should be honored. Porteri asserts the ADs are the necessary proof of the person’s desires and thus should govern when capacity is lost.[16] Bodily integrity, philosophical belief, and autonomy must be respected once the capacity to make decisions is lost. lll. Recommendations Capacity is task-specific; therefore, determining when the healthcare AD should be implemented must be based on capacity testing.[17] This process turns ADs into a framework for interpreting the person of the lifetime’s wishes as applied to the person of the moment. For example, dying in battle is quite a different memorial outcome compared to experiencing a vegetative state while fed artificial hydration and nutrition through a feeding tube. Establishing the desired legacy of the person with Alzheimer’s disease in an AD allows the patient more autonomy to choose how they wish to be remembered.[18] One problem with our current system for ADs is that it deviates substantially from state to state. The Patient Self Determination Act does not prescribe how state laws should address significant memory loss.[19] Therefore continuity of person is not assumed in all state laws. A federal law that supports the acknowledgment of ADs would be preferable. The right to determine how you live and die is a fundamental choice and should not depend on the state in which one lives. Fortunately, perspectives between stakeholders and other parties align in many cases, and their expressed wishes respect the person of a lifetime. To maintain the patient’s dignity during disease progression for a greater proportion of Alzheimer’s patients, states should honor ADs and RADs. Currently, ADs offer an unpredictable degree of protection, especially as patients move from state to state. Unpredictable factors include judicial discretion, shifts of thinking within the body politic, and the power of stakeholders with interests at odds with those of the person of the lifetime. Judicial discretion should be limited to invalidating only those ADs that were based on fraud, undue influence, or incapacity at their inception. Administrative personnel and other stakeholders should not have authority to redefine a person’s legacy once the person reaches the stage at which they no longer have capacity. ADs and RADs could include dispute resolution mechanisms as well as directives with respect to those persons the person of the moment does not want involved in their care. In declaring the continuity of person yet acknowledging the differences due to significant memory loss, Giovanni Boniolo concludes, “We have to respect them and their choices and decisions as long as they are capable of choosing and deciding. Then, when this capacity has vanished, we must continue respecting not only them, but also the choices and decisions they made.”[20] Boniolo is absolutely correct; one is capable of creating AD until they are not. A sharper scientific approach would base the point at which one no longer has capability to make decisions on biological or clinical markers. The law should ensure that ADs and RADs made prior to that point govern care and research decisions. CONCLUSION Permitting an unfaithful surrogate or an administrator with a different philosophy to reinterpret patient desires based on current circumstances would create a “slippery slope,” compromising the known wishes of a person with Alzheimer’s disease as preserved in writing. ADs and RADs are the best opportunities for people with early Alzheimer’s disease, or those who recognize the risk of dementia, to preserve their legacy and to use their autonomy to govern care of the significantly memory-impaired person of the moment. Preserving the legacy of patients in binding documents avoids the quagmire of courts, doctors, surrogates, and caregivers. Ultimately, ADs and RADs can maintain continuity of the person of a lifetime’s dignity even when that person experiences cognitive impairment, evolving into the person of the moment. [1] Weller J, Budson A. Current Understanding of Alzheimer's Disease Diagnosis and Treatment. F1000Res. 2018;7:F1000 Faculty Rev-1161. Published 2018 Jul 31. doi:10.12688/f1000research.14506.1 [2] Gauthier S, Leuzy A, Racine E, Rosa-Neto P. Diagnosis and management of Alzheimer's disease: Past, present and future ethical issues. Progress in Neurobiology. 2013;110:102-113; Naylor M, Karlawish J, Arnold S et al. Advancing Alzheimer's disease diagnosis, treatment, and care: Recommendations from the Ware Invitational Summit. Alzheimer's & Dementia. 2012;8(5):445-452. [3] The combination of Tau proteins becoming defective, creating neurofibrillary tangles, and β amyloid plaques building up in the neural connections of the brain prevents neural functioning, resulting in brain cell incapacity and death; Zetterberg H, Schott J. Biomarkers for Alzheimer’s disease beyond amyloid and tau. Nat Med. 2019;25(2):201-203.; Qin K, Zhao L, Gregory C, Solanki A, Mastrianni J. “Dual Disease” TgAD/GSS mice exhibit enhanced Alzheimer’s disease pathology and reveal PrPC-dependent secretion of Aβ. Sci Rep. 2019;9(1). doi:10.1038/s41598-019-44317-w; Qin K, Zhao L, Gregory C, Solanki A, Mastrianni J. “Dual Disease” TgAD/GSS mice exhibit enhanced Alzheimer’s disease pathology and reveal PrPC-dependent secretion of Aβ. Sci Rep. 2019;9(1). [4] Kitwood T. Dementia Reconsidered, Revisited: The Person Still Comes First. 2nd ed. New York: Open University Press; 2019. [5] Dale S. Personhood, Critical Interests, and the Moral Imperative of Advances Directives in Alzheimer's Cases. Voices in Bioethics. 2021;7:1-6. [6] Dale S. Personhood, Critical Interests, and the Moral Imperative of Advances Directives in Alzheimer's Cases. Voices in Bioethics. 2021;7:1-6, citing Dworkin R. (1994) Life’s Dominion; An Argument About Abortion, Euthanasia, And Individual Freedom. 1st ed. New York: Vintage Books. [7] Dale S., 2021. [8] Person M, Hanssen I. Joy, Happiness, and Humor in Dementia Care: A Qualitative Study. Creative Nursing. 2015;21(1):47-52.; Yeaman P, Ford J, Kim K. Providing Quality Palliative Care in End-Stage Alzheimer Disease. American Journal of Hospice and Palliative Medicine®. 2012;30(5):499-502. [9] Kim S. The Ethics of Informed Consent in Alzheimer Disease Research. Nature Reviews Neurology. 2011;7(7):410-414.; Porteri C. Advance Directives as A Tool to Respect Patients’ Values and Preferences: Discussion on The Case Of Alzheimer’s Disease. BioMed Central Medical Ethics. 2018;19(1).; Naue U. ‘Self-care without a self’: Alzheimer’s Disease and The Concept of Personal Responsibility for Health. Medicine, Health Care and Philosophy. 2008;11(3):315-324. [10] Sieger CE, Arnold JF, Ahronheim JC. Refusing artificial nutrition and hydration: does statutory law send the wrong message?. J Am Geriatr Soc. 2002;50(3):544-550. doi:10.1046/j.1532-5415.2002.50124.x [11] Porteri C. Advance Directives as A Tool to Respect Patients’ Values And Preferences: Discussion On The Case Of Alzheimer’s Disease. BioMed Central Medical Ethics. 2018;19(1). [12] Buller T. Advance Consent, Critical Interests and Dementia Research. Journal of Medical Ethics. 2014;41(8):701-707.; Jongsma K, van de Vathorst S. Dementia Research and Advance Consent: It Is Not About Critical Interests. Journal of Medical Ethics. 2014;41(8):708-709.; Jongsma K, Perry J, Schicktanz S, Radenbach K. Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study. BioMed Central Psychiatry. 2020;20(1). [13] National Bioethics Advisory Commission (NBAC) Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity. Rockville: National Bioethics Advisory Commission; 1998. https://pubmed.ncbi.nlm.nih.gov/12747354/ [14] Porteri C. Advance Directives as A Tool to Respect Patients’ Values and Preferences: Discussion on The Case Of Alzheimer’s Disease. BioMed Central Medical Ethics. 2018;19(1). https://pubmed.ncbi.nlm.nih.gov/29458429/ ; Jongsma K, van de Vathorst S. Dementia Research and Advance Consent: It Is Not About Critical Interests. Journal of Medical Ethics. 2014;41(8):708-709. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.997.8037&rep=rep1&type=pdf [15] Porteri C. Advance directives as a tool to respect patients’ values and preferences: discussion on the case of Alzheimer’s disease. BioMed Central Medical Ethics. 2018;19(1). https://pubmed.ncbi.nlm.nih.gov/29458429/ [16] Porteri C. Advance directives as a tool to respect patients’ values and preferences: discussion on the case of Alzheimer’s disease. BioMed Central Medical Ethics. 2018;19(1). [17] McDonald A, D'Arcy R, Song X. Functional MRI On Executive Functioning in Aging and Dementia: A Scoping Review Of Cognitive Tasks. Aging Medicine. 2018;1(2):209-219; Sclan S, Reisberg B. Functional Assessment Staging (FAST) in Alzheimer's Disease: Reliability, Validity, and Ordinality. Int Psychogeriatr. 1992;4(3):55-69; Appelbaum P, Grisso T. Assessing Patients' Capacities to Consent to Treatment. New England Journal of Medicine. 1988;319(25):1635-1638; Fisher C, Appelbaum P. Diagnosing Consciousness: Neuroimaging, Law, and the Vegetative State. Journal of Law, Medicine & Ethics. 2010;38(2):374-385. [18] Menzel P. Ethical Perspectives on Advance Directives for Dementia - The Hastings Center. The Hastings Center; 2018. https://www.thehastingscenter.org/ethical-perspectives-advance-directives-dementia. Accessed December 8, 2018. [19] HR 5835 Omnibus Budget Reconciliation Act of 1990, Title IV, Section 4206. US Congress. [20] Boniolo, G. Demented Patients and The Quandaries of Identity: Setting the Problem, Advancing A Proposal. HPLS 43, 21 (2021). https://doi.org/10.1007/s40656-021-00365-y

Contemporary definitions of resilience stress adaptability to changing ecological and economic conditions (Berkes, Colding and Folke; Castleden, McKee, Murray and Leonard 369). But this approach to resilience is a measure of individual ‘fitness’ to an adaptive whole (Hughes 165; McMahon et al.; Walker and Cooper). Not only is this incongruous with the experience of reproductive loss and infertility, it also works to sideline alternative forms or sources of resilience (Cox). In this paper, we share our efforts to build on previous theories of resilience by engaging in intimate dialogues and written reflections about our personal experiences with reproductive loss. Throughout the paper our reflections are interspersed with our ‘findings’ about the relationship between reproduction and resilience. For us, an active process of dialogically grounded reflection opened up the possibility of a different type of theoretical engagement, one that ultimately produced different enactments, and offered unexpected redirections, both of our experience with reproductive resilience, and in the resilience literature at large. This deeply personal, dialogical frame allowed us to move beyond the anecdotal and confessional to encompass a praxis that engaged the acutely affective reality of reproductive resiliency. Katherine: Three years ago, in the wake of the global financial crisis, I became interested in growing references to resilience in the media. I decided to start a graduate reading group on this theme. This was 'serious academic work.' We looked at questions like: Why has the UNDP rebranded itself 'Empowered Lives, Resilient Nations'? But my thinking about resilience was interrupted by a personal crisis. In January 2011, I was surprised and delighted to discover I was pregnant after years of clinically diagnosed 'unexplained infertility.' So my husband and I were devastated when, in May, a medical crisis (for me, not the baby) forced us to abort the pregnancy in its fifth month. Two years of exhausting medical interventions later, I learned that I am unable to bear children of my own—unable to reproduce—a fact which I am still actively struggling to reconcile. Ayumi: Strange the surprising state of affairs that would shift an employer and research lead into an acquaintance, confidante and friend. I initially learned of her challenges to carry a child to full term through proximity. As her teaching assistant I felt obliged to inform her that I had recently experienced an early miscarriage, and that it could possibly disrupt my work in her course. She was visibly pregnant at the time. Soon after, when I was participating in the resilience reading group, she miscarried as well. Reproductive Resilience A year or more passed before we spoke to each other about our losses, but when we did, we realised that we had both been influenced by dominant discourses around reproduction. Identifying the source of these pressures was an important topic of reflection for us. We found that dominant conceptions of reproductive resilience are overshadowed by a biological imperative to reproduce. When a woman is unable to conceive, or experiences a reproductive loss, she is told to ‘try again.’ There can be solace in trying, and in the ‘successful’ cases, a ‘happy resolution’ is achieved in subsequent pregnancies. But in other cases, the woman's body must produce several reproductive losses before medical professionals can understand the causes of her inability to reproduce (McMahon et al. 2007; Sexton, Byrd, and von Kluge 236). A series of increasingly invasive medical interventions can then be employed to increase the likelihood of reproduction. As a biological imperative, this type of reproductive resilience demands “progressive adaptation to a continually reinvented norm” (Walker and Cooper 156) of what it means to be fertile. But this is more than just a medical norm. Increasingly, reproduction also implies “adaptability to extremes of [ecological and economic] turbulence” (ibid.) that establish the conditions in which fertility is both experienced and understood, something that Katherine in particular had faced: Katherine: Why is it that we both ended up in this situation? Why is it that we are far from being alone in being 40 and childless? I am partly a product of the 1980s teen pregnancy hysteria in North America which made it an anathema for young women to ‘jeopardise’ their earning potential by having children. This makes me particularly bitter because I now understand that, at that moment in history, my society decided to prioritise my productive contributions to capital over socialised financing of the conditions that would allow me to produce a family. What I am suggesting is that the discourses which produce the preconceived notions that we attempt to ‘live up to’ are also discourses that we must, in many ways, ‘live with,’ because like it or not, they contributed to producing the situation which is now prompting us to write this paper! In this sense, reproductive resilience also becomes a measure of normalcy, where normalcy includes the adaptability of human bodies and biological process to the demands of a socio-economic system. Reproductive loss or infertility then becomes a source of personal weakness or abnormality that must be overcome, and a cause of personal degradation, which is often kept silent. In our experience, although individual responses differed greatly, either way the failure to reproduce demanded a response: Katherine: After my loss, I became determined to be pregnant again. For me IVF treatments were not so much about wanting to know with certainty my bodily ability to bring a child into the world. I was working under the perhaps rather desperate assumption that they would. I think of my IVF year more as desperation to achieve an end, a fear of failure, a crisis of sustainability, and a disbelief or disassociation from my own physical reality—the fact of my advancing age. The idea of ‘self-enclosed bodily anxiety’ captures this wonderfully for me. Ayumi: I did nothing, not a single consultation with a fertility expert, no visits to herbal medicine specialists, at most, a half-hearted internet search on adoption agencies. My path insisted upon embracing uncertainty over entrusting others with telling me the limits of my bodily integrity. When we began to share our stories with each other, we noticed that, despite having been surrounded by loving families and supportive colleagues at our times of crisis, both of us felt a tremendous sense of isolation as we tried to make sense of and respond to our losses. So a second area of reflection concerned the source of these emotions—both the sense of isolation, and the way in which it reinforced the normalisation of dominant discourses of reproductive resilience. We found that the reproductive industry’s medical interventions and specialised language community codify and reinforce measures of normalcy and sustain a coerced and often isolating process of adaptation to ever-more medicalised norms of fertility (Bonanno 753). This isolation is particularly apparent for women who choose to pursue fertility treatments. The language of medical intelligence is overwhelming and difficult to learn, creating a barrier between insiders and outsiders to fertility interventions (see for example: Kagan et al., S151). Fertility treatments are not only highly technical, but also a very introspective process, making it difficult for fertility partners, let alone friends and family, to fully comprehend what is going on, or to be involved. Meanwhile, support is difficult to find in a fertility clinic’s waiting room at 7am where groups of women silently await blood work to monitor hormone levels, avoiding eye contact by scanning their phones or reading a magazine. Many women turn instead to online forums, such as www.ivf.ca, where there is mutual comprehension wrapped in the security of anonymity. Rather than explain themselves each time they post to a forum, participants take up the language of reproductive medicine to detail their reproductive interventions in codified signature files (see Figure 1 below). Here, lengthy fertility campaigns become a merit badge of adaptability and perseverance. In their messages, participants share jingoistic mantras like ‘It only takes one!’, one harvested egg to have a child, as they cheer each other on in the search for a baby (Figure 2 below). These types of forums can empower insofar as they educate and encourage. However, they can also enclose and isolate as they cut patients off from family and friends, while creating external pressure to achieve a biological imperative suspended in changing parameters for what it means to be fertile. Figure 1: Example of a Signature File from an IVF Discussion Forum Figure 2: “It only takes one!” This kind of isolated adaptation to medicalised norms of fertility can come at a very high cost. For example, one friend was so traumatised by the multiple fertility interventions and failures it took for her to bear a child that she was ultimately unable to connect with the baby that she bore. The forward march of fertility treatments under the mounting pressure of advancing age required her to defer mourning for the multiple losses that she was experiencing: the loss of a child, the loss of normalcy, the loss of voice. She alone sustained the physical and psychological weight of reproductive resilience, and the pressures of achieving a ‘good outcome’ within the biological limits of her fertility window. When her daughter was born, she was engulfed by an avalanche of backlogged emotions—years of accumulated grief and stress. She was eventually diagnosed with post-traumatic stress disorder, and has struggled to develop a meaningful relationship with her child. But we also found that one need not pursue fertility treatments to experience the isolating and normalising effects of dominant conceptions of fertility. Some experienced infertility without feeling the need to consult medical professionals, or discover through initial consultations that a commercial and medicalised system was not the means through which they wanted to create a future for themselves. Others could find it difficult to contemplate the ‘reproduction’ of a ‘family’ when past experiences with family had been difficult. Yet, despite these decisions, changing norms of fertility continued to reinforce the biological imperative of reproduction in ways that become interwoven with tacitly heteronormative conceptualisations of the nature of family and community (Peters, Jackson, & Rudge 132-134). Katherine: Just the other day at the community garden, one of the gardeners, whom I had just met, wanted to know whether I had any children. When I said no, he bluntly asked me, ‘Why not?’ Just like that: ‘Why not?’ How can I even begin to answer this question? I’ve started to look people squarely in the eye and say, ‘I guess I must not be blessed.’ It’s not because I think I’m not blessed—my life is incredibly rewarding. It’s because it’s the best way I can think of to point out how inappropriate that line of questioning is. But I guess it’s also a defence… Ayumi: I do find that there is something deeply gendered and heterosexist about that line of questioning. As if there is some type of biological expectation for women to reproduce as a means to complete the family. And in absentia, in not raising the biological imperative with same-sex couples—in particular men, a whole host of assumptions are built into forming a good family. It’s like a double disrespect. In the first instance, the biological imperative falls on women, and in the second instance, the lack of expectation leaves many others out of the conversation. In total, we found that resilience always came with a modifier; otherwise we were left asking ‘resilience of what?’ ‘Resilience for what?’ Economic resilience, for example implied the adaptability of the capitalist system. Similarly, rather than expanding choices for and beyond women, the reproductive industry reinforced the normalcy of a gendered biological imperative that ultimately rested on the shoulders of an isolated individual. “The criteria of selection may well have shifted. Yet in the last instance, and for all its flexibility, the resilience perspective is no less rigorous in its selective function than Darwinian evolution” (Walker and Cooper 156). Dialogue Ayumi: To my surprise, she wanted to talk about it one day when we went for lunch, as though words would form the reality of her unexpected shift from pregnant to not-pregnant. The psychological experience of my own miscarriage had been devastating, so invisible, unannounced. Only those who needed to know were privy to the situation. Perhaps I quietly believed that if I spoke very little of it, it could almost have been mistaken for nothing other than conjecture or wishful thinking. Our conversation reproduced the reality of my failure to carry my child into childbirth. Her request for an empathetic listener would mean that a solitary introspection to resignify respect for my own body would give way to responding with due respect for her becoming no longer pregnant. Dialogue did more than just allow us to make sense of what we were experiencing. In conversation, reproductive resilience became something other than what we experienced in isolation. As experiences transformed into words, one perspective intermingled with and shaped the other, revealing imaginings that undid the closures and conclusions reached in our own minds, and offered an opportunity to reconsider the expectations of dominant narratives. Other possibilities surrounded, awaited contemplation, discursive engagement, solicitude in the shadows of experiences that coincided and diverged, resting assured that points of disagreement could be articulated as conjecture, wordless acknowledgement or future interactions. Our very different experiences and choices formed a context for conversation. We asked of one another: Why did this happen? How do you relate to your body? What do you feel is expected of you? What do you plan to do now? Upon dialogical reflection, it became clear that bodies, rather than being intentional enactments of adaptation, were more often than not products and reproductions of experiences and discourses: Ayumi: What kinds of biological, familial, technological, and economic imperatives are pressed upon our bodies? I wonder too about the ways in which consumerisation of reproduction plays upon our imagination of what it would be like to be a parent, creating a market and psychological demand for this life-changing acquisition of a human life. Perhaps these imperatives are operationalised as different mediations on the body, which is seen as a passive recipient of these directives. The externalisation and internalisation of our thoughts allowed us to see how our knowledge was suspended between our relationship with our body and the, often unexpressed, expectations of others which were based on their unexamined assumptions of what it meant to be a woman, a sexual being, a member of a family, a contributor to the community. Thinking about the body as something performed allowed us to use words to make real, reflect on, reproduce or recast our experiences: Katherine: I’m so independent, even in my relationship with my husband that I was a bit shocked at how my miscarriage rippled through my networks of friends, colleagues and family. People I hardly knew told me that they cried when they heard! I forget sometimes that my husband also suffered a huge loss, a blow to his identity and confidence, and a challenge to his sense of place. It is not just me who needs to engage with questions of resilience, but so does he, and we also need to do that together, and these processes will ripple through our networks of friends, family and co-workers in ways that affect the overall resiliency of a community of people. Ayumi: I talked to my partner about how deep down sometimes I feel that I've already done my work as a caregiver. I did a lot of volunteer and paid work with children when I was younger. I’ve taken care of so many children who ranged dramatically in age, mental and physical health and mobility, children who were dying and then died, and this took up so much of my teens, twenties and early thirties. I told him that while I've had that experience, he hasn't spent so much time with kids so that I wished for him to think about if this was something he wanted to explore (taking on a care giving / parental role), considering the options that are available to us through adoption or fostering. In dialogue, we figured out how to talk to one another, to locate a sense of fun within urgency, to reach toward mutual understanding, to test borders and to reshape them. Putting experiences and expectations into words allowed us to uncover expansive possibilities—options not considered, courses not taken. Ultimately, we began to think of reproductive resilience not as the means to achieve a biological imperative, but rather as a relational space of production. As we exchanged ideas, we came to question the assumption that reproductive resilience could be channeled through an individual body, and consequently we began to push back on definitions of fertility which served as measures of ‘fitness’ to a mythical adaptive whole. Through dialogue we resignified our individualised and isolated experiences with reproduction, turning what we experienced as vulnerability into a starting point for the reconceptualisation of resilience. This process—we call it ‘resiliency’ to distinguish it from adaptation—became an act of occupying our own reality in and through the relationships that surround us. Whereas resilience was about individual adaptations to shifting but still dominant norms of fertility, resiliency was about negotiating and constituting a fertile world through dialogues: Ayumi: I found our discussion of care a vitalising part of our conversations. Somehow, through forging different relations, the body propels resilience toward resisting external reinforcements to individualise reproduction and calls forth a collective response. Katherine: Today we discussed reproduction as a process of constructing a caring condition. Caring both in the sense of nurturing, but also in the sense of consideration. This was the most personally enriching part of our discussion – I felt empowered to make decisions about how I wanted to engage in caring and nurturing. This opened my mind to the possibility of adoption, but also to the fact that I express myself as a caring being in many other ways. Resiliency suggests actively engaging people and forces in ways that do not impose a certain order or state of affairs. But we struggled to think about how this new vision of reproductive resiliency would articulate with resistance. What does it mean to resist when biological failure renders acceptance of reproductive decline the only possible way forward? Though we can resist the conditions that created our current situations, we cannot resist our own pasts or our own biological reality. Should our inability to reproduce be seen as a victory in the fight against material myths of parental bliss? Or does our inability to reproduce make us the martyrs of the post-modern and neoliberal era? We want reproductive resiliency to offer a different experience of fertility. But we also want it to be a foundation to resist the normalisation of biological adaptation to the demands of a turbulent socio-economic system. We can do this by making a distinction between the biological act of reproduction (producing a baby), and the social reproducibility of care (nurturing, engaging, resisting, being, sharing, performing, etc.). Reproductive resiliency is concerned with nurturing the fertile enactments of human caring. It is on the basis of human caring that we can resist a system that creates the need for fertility adaptations, and it is also on this basis that we can open up room for thinking about reproductive resiliency in a respectful and socially engaged way. References Berkes, Fikret, Johan Colding and Carl Folke. “Introduction.” Navigating Social-Ecological Systems: Building Resilience for Complexity and Change. Ed. F. Berkes, J. Colding and C. Folke. Cambridge, U.K.: Cambridge University Press, 2002. Bonanno, George A. “Uses and Abuses of Resilience Construct: Loss, Trauma, and Health-Related Adversities. Social Science & Medicine 74.5 (2012): 753-756. Castleden, Matthew, Martin McGee, Virginia Murray & Giovanni Leonard. “Resilience Thinking in Health Protection. Journal of Public Health 33.3 (2011): 369-377. Cox, Pamela. “Marginalized Mothers, Reproductive Autonomy, and Repeat Losses to Care.” Journal of Law and Society 39.4 (2012): 541—561. Herrman, Helen, et al. “What Is Resilience?” Canadian J. of Psychiatry 56.5 (2011): 258-265. Hughes, Virginia. “The Roots of Resilience.” Nature 490 (2012): 165-167. Kagan, et al. “Improving Resilience among Infertile Women: A Pilot Study.” Fertility & Sterility 96.3 (2011): S151. McMahon, Catherine A., Frances L. Gibson, Jennifer L. Allen and Douglas Saunders. “Psychosocial Adjustment during Pregnancy for Older Couples Conceiving through Assisted Reproductive Technology.” Human Reproduction 22.4 (2007): 1168-1174. Peters, Kathleen, Debra Jackson, and Trudy Rudge. “Surviving the Adversity of Childlessness: Fostering Resilience in Couples.” Contemporary Nurse 40.1 (2011): 130-140. Sexton, Minden B., Michelle R. Byrd, and Silvia von Kluge. “Measuring Resilience in Women Experiencing Infertility Using the CD: RISC: Examining Infertility-Related Stress, General Stress, and Coping Styles.” Journal of Psychiatric Research 44.4 (2010): 236-241. Walker, Jeremy, and Melinda Cooper. “Genealogies of Resilience: From Systems Ecology to the Political Economy of Crisis Adaptation.” Security Dialogue 14.2 (2011): 143-160.

La presente ricerca indaga il fenomeno dei giovani “caregivers” nel contesto italiano. I young caregivers (yc) sono bambini/e e adolescenti che svolgono attività di cura. Questa condizione si verifica tipicamente quando un membro della famiglia soffre di malattie croniche o disabilità, e il giovane deve far fronte a queste difficoltà in prima persona. I motivi per cui i yc non hanno alternative a questa condizione possono essere molteplici, come le scarse risorse finanziarie e gli aiuti insufficienti da parte dei servizi sociali e sanitari. Anche se il fenomeno è stato studiato in diverse nazioni, non è stato ancora approfondito in Italia. Ci sono due possibili spiegazioni per questo “ritardo” nella ricerca: il sistema di welfare italiano e il concetto dell’infanzia nel nostro contesto. In Italia il welfare è di tipo familistico, ovvero lo Stato svolge un ruolo residuale nel fornire risorse e servizi a supporto dei cittadini. Inoltre, le famiglie sono abituate a provvedere ai propri bisogni autonomamente. Tuttavia viene spontaneo pensare che questo lavoro di cura è normalmente associato a persone adulte (specie donne), ma non a minorenni. Come suggerisce la nuova sociologia dell’infanzia infatti i minori sono considerati senza autonomia, dipendendo dagli adulti. A fronte di assente riconoscimento sociale e giuridico delle responsabilità di cura svolte da bambini e adolescenti, i young caregivers vengono definiti come un gruppo nascosto, pertanto sono anche difficili da individuare. Per superare questo ostacolo, è stata condotta una ricerca con approccio partecipativo. L’obiettivo infatti è stato quello di coinvolgere le persone tradizionalmente considerate come oggetto di ricerca, facendole diventare protagoniste della stessa, assumendo il ruolo di co-ricercatori. Questa inversione di prospettiva è possibile solo riconoscendo in loro un “sapere esperienziale” derivante dalla vicinanza all’oggetto di studio. I co-ricercatori collaborano con un ricercatore in un "Steering group", il quale svolge la progettazione della ricerca e analizza i dati. All'interno dello " Steering group ", i co-ricercatori sviluppano consapevolezza, rielaborano la loro identità e maturano il loro bisogno di cambiamento sociale. L’analisi della ricerca è stata condotta attraverso un mixed method, con tre livelli di analisi. In primo luogo, un'analisi secondaria sui dati dell'Istat (sondaggio multiuso su "Aspetti della vita" - 2015) è stata utile per comprendere le caratteristiche di bambini e adolescenti e confrontare le differenze tra famiglie straniere e italiane e tra nord e sud Italia. In secondo luogo, la surevy nelle scuole medie di Milano è stata utile per comprendere specifici al caregiving. Infine, è stato realizzato un focus group con potenziali yc, allo scopo di comprendere il loro livello di consapevolezza e i loro bisogni. I yc italiani hanno le stesse caratteristiche degli altri giovani caregiver in tutto il mondo. Il fenomeno è nascosto e non riconosciuto. Di conseguenza, i yc e le loro famiglie mancano di riconoscimento e supporto sociale. La ricerca mette in luce le attività svolte in famiglia, dal lavoro domestico al supporto emotivo. Le conseguenze sui yc riguardano la scuola, le relazioni con i pari e il benessere.
This paper introduces research on young carers in an Italian context. This topic describes the issue of caregiving performed by children. The activities of care begin when one family member has a chronic illness or disability and there are no alternatives for coping with these difficulties. There are many factors associated with the issue of absence of alternatives, such as: few financial resources, a weak informal support network (relatives, friends and neighbors) and insufficient aid from social and health services. Even if the phenomenon has been studied in different countries, it has not been widely investigated in Italy. There are two possible explanations for this lack of research: the Italian welfare system and the concept of childhood. In Italy welfare is familistic. It means that the State has only a residual role in providing resources or services to support citizens. Furthermore, families are mandated to provide care by themselves. One would argue that the work of care is usually associated with adult figures, in particular women, but not with minors. As the new sociology of childhood suggests, this happens because minors are considered without autonomy and their own agency and dependent on adults. . Since they are identified as a hidden group, it makes them hard to reach. In order to overcome this obstacle, a participatory approach has been used in a research on Italian young carers. Its aim was to engage people who are traditionally considered objects of research to enhance the knowledge about this topic. This way the objects of research become actors and acquire the role of co-researchers. This inversion of prospective is possible only by recognizing co-researchers being “experts by experience”, since their “experiential knowledge” comes from experiencing everyday life problems. The co-researchers work together with a researcher in a “Steering group”, which carry out the design of research and analyse the data. Inside a “Steering group”, the co-researchers develop awareness, rework their identity and mature their need for social change. The issue of this research project was analysed with a mixed-method research with three levels of analysis. Firstly, a secondary analysis on Istat data (multipurpose survey on “Aspects of life”- 2015) was useful to understand the characteristics of children and teenagers and to compare foreign verses Italian families and the differences between northern and southern Italy. Secondly, a survey in middle schools in Milan, was helpful to understand the outcomes connected to the child’s role. Lastly, focus groups were organised with young carers, in which the aim was to understand their needs, awareness and the perceptions of young caregivers. Italian young carers have the same characteristics as other young carers world-wide. The phenomenon is hidden and unrecognized. Consequently, young carers and their families lack recognition and welfare provision. The analysis shows the activities that young carers provide in their family: instrumental and care-related. The outcomes are connected to school, peer relations and personal wellness and sometimes to mental health problems.