Gotowa bibliografia na temat „Moran, Kathleen Murray”

A harmonious state of things is often perceived idyllic. It is devoid of cacophony, hostility, and dissension. It denotes peace, accord, and a relationship characterized by a lack of conflict. True harmony goes much deeper than absence of conflict or condemnation for the lack of peace. This paper presents the challenges to harmony using the theory of care ethics. It will unveil the possibilities of care, even if it was initially lodged at home and family. Using an expansive view, this paper claims that harmony is not farfetched if nations bring to the table the ethics of care. Hinged on care ethics are the principles of collective praxis, peace, and solidarity which enrich human potentials and makes interconnections, and solidarity possible. Thus, the paper will employ philosophical and theological analysis that addresses the following: 1) Care ethics as an ethical concept with myriad variants, yet praxis-driven; 2) Pope Francis’ Laudato Si’ as an appeal to foster care for all; 3) A theological reinterpretation of “rada”, and 4) Care ethics as an injunction to revalue care as a social good. Incorporating Pope Francis’ message in Laudato Si’, this paper hopes to underscore promoting a culture of caring through collective dialogue. References Anderlik, Mary R. The Ethics of Managed Care: A Pragmatic Approach. Bloomingdale: Indiana University Press. 2001. Blair-Loy, Mary. Competing Devotions: Career and Family among Women Executives. Cambridge, Massachusetts: Harvard University Press. 2003. Frank Parsons, Susan, ed. The Cambridge Companion to Feminist Theology. Cambridge: Margaret Beaufort Institute of Theology, 2002. Frank Parsons, Susan. Feminism and Christian Ethics. Cambridge: Cambridge University Press, 1996. Gardner, E. Clinton. Justice and Christian Ethics. Cambridge: Cambridge University Press, 1995. Gensler, Harry J., Earl W.Spurgin, and James C.Swindal, eds. Ethics: Contemporary Readings. New York: Routledge, 2004. Greene-Mccreight, Kathryn. Feminist Reconstructions of Christian Doctrine: Narrative Analysis and Appraisal. Oxford: Oxford University Press, 2000. Grimshaw, Jean. Philosophy and Feminist Thinking. Minneapolis: University of Minnesota Press, 1986. Groenhout, Ruth E. “I Can’t Say No: Self-Sacrifice and an Ethics of Care,” in Ruth E. Groenhout and Marya Bower, eds. Philosophy, Feminism, and Faith, pp. 152-174. Bloomington: Indiana University Press, 2003. Groenhout, Ruth E. and Marya Bower, eds. Philosophy, Feminism, and Faith. Bloomington: Indiana University Press, 2003. Hampton, Jean. “Feminist Contractarianism,” in in Louise Antony and Charlotte Witt, eds. A Mind of One’s Own, pp. 227–255. Boulder, Colo.: Westview Press, 1993. Held, Virginia. ‘The Ethics of Care’ in David Copp, ed. The Oxford Handbook of Ethical Theory. New York: Oxford University Press, 2006. Held, Virginia. The Ethics of Care: Personal, Political, and Global. Oxford: Oxford University Press, 2006. Hilkert Andolsen, Barbara. “Agape in Feminist Ethics,” The Journal of Religious Ethics 9 (1981): 69–83. Hoagland, Sarah Lucia. “Some Thoughts on ‘Caring,’” in Claudia Card, ed. Feminist Ethics, pp. 246–63. Lawrence: University Press of Kansas, 1991. Hoffman, Martin L. Empathy and Moral Development: Implications for Caring and Justice. Cambridge: Cambridge University Press, 2000 Homiak, Marcia. “Feminism and Aristotle’s Rational Ideal,” in Louise Antony and Charlotte Witt, eds. A Mind of One’s Own, pp.1–18. Boulder, Colo.: Westview Press, 1993. Hoose, Bernard. Christian Ethics: An Introduction. London: Continuum, 1998. Isherwood, Lisa and Kathleen McPhillips, eds. Post-Christian Feminisms: A Critical Approach. Hampshire. England: Ashgate, 2008. Jardine, Alice and Paul Smith, eds. Men in Feminism. New York: Routledge, 1987. Kieran Cronin. Rights and Christian Ethics. Cambridge: Cambridge University Press, 1992. Macrae, Janet A. Nursing as a Spiritual Practice: A Contemporary Application of Florence Nightingale's Views. New York: Springer Publishing Company. 2001. Michael Slote, Morals from Motives. New York: Oxford University Press, 2001. Murphy, Peter F. Feminism and Masculinities: Oxford Readings in Feminism. Oxford: Oxford University Press, 2004. Murray, Mary. The Law of the Father? Patriarchy in the Transition from Feudalism to Capitalism London: Routledge, 1995. Outka, Gene. “Universal Love and Impartiality.” In Edmund Santurri and William Werpehowski, eds. The Love Commandments: Essays in Christian Ethics and Moral Philosophy. Washington, D.C.: Georgetown University Press, 1992. Parks, Jennifer A. No Place Like Home? Feminist Ethics and Home Health Care. Bloomingdale: Indiana University Press. 2003. Post, Stephen. A Theory of Agape: On the Meaning of Christian Love. Lewisburg, Pa.: Bucknell University Press, 1990. Ramsey, Paul. Basic Christian Ethics. Louisville: Westminster/John Knox Press, 1993.

Photo by 168502358© Designer491|Dreamstime.com ABSTRACT Psychiatric Advance Directives (PADs) can protect the autonomy of those living with severe mental illness (SMI) and improve their treatment outcomes. However, their uptake is low for several documented reasons. Attempts to increase patient uptake of PADs can circumvent risks of undue provider influence in the facilitation process and promote optimal mental health outcomes with a peer-support model, thereby protecting patient autonomy in accordance with the principle of beneficence. Moreover, policymakers and mental health organizations should devote sufficient resources toward establishing peer-support specialist networks to mitigate the inequities those with SMI face. Capability theory can guide state leaders and directors in justifying the distribution of scarce resources to achieve these outcomes. INTRODUCTION Since the mid-twentieth century, scholars have increasingly rejected a strong paternalistic relationship between physician and patient, emphasizing the right of patients to accept or decline medical treatment.[1] With this greater emphasis on patient autonomy, a healthcare model of shared decision-making ascended in the 1980s.[2] Considering limitations in a patient’s capacity to make informed decisions in their treatment, the US Congress passed the Patient Self-Determination Act in 1990.[3] The act legally obliged hospitals and other care facilities that participate in Medicare and Medicaid to ask patients if they have an advance directive. In the absence of such a directive, these institutions are to ask if patients would like to complete one and to abide by it if presented by the patient.[4] These directives give patients control of future medical decisions in three key areas: entrusting an individual to act as a medical decision-making proxy, preferences for and consent to future treatment, and a statement of overall personal values and preferences to help inform future medical decisions by providers.[5] Although professionals initially crafted the law with end-of-life care in mind, 27 states now have mental health-specific provisions included in advance directive statutes.[6] As a subset of advance directives, psychiatric advance directives (PADs) are meant to protect patient autonomy during the treatment of psychiatric episodes when competence is compromised. Despite their promise and protection, PADs are underutilized by those with serious mental illness (SMI). In a survey of psychiatric patients, only 4-13 percent of respondents across multiple US sites reported having completed a PAD.[7] The same study indicated that 66-77 percent of respondents were interested in completing one if given assistance.[8] Having recognized the gap between patient interest and uptake, researchers have explored the possible reasons for this disparity. Several barriers have been identified and characterized at the system, health-professional, and service-user levels.[9] Although exploring interventions targeted at each level individually may be worthwhile, several barriers may be effectively overcome with one cross-level intervention. Specifically, a network of peer-support facilitators may be able to mitigate resource concerns of the system level, provider fears, reluctance, and lack of knowledge of PADs at the health-professional level, and a lack of trust and support among those with SMI within the service-user level.[10] Although the Patient Self-Determination Act mandated protections for patient autonomy, the law did not provide a sufficient mechanism to ensure the broad use of those protections. Much of the logistical burden falls on those living with SMI to educate themselves and initiate the completion of a PAD.[11] However, many of those living with SMI already face additional burdens that prevent their successful navigation of a complex healthcare system, including poverty, marginal housing, and food insecurity.[12] In addition, individuals with SMI tend to be more socially isolated, with few others to trust besides their providers.[13] Efforts to promote the uptake of PADs by those living with SMI that neglect these additional burdens risk exacerbating health inequities faced by those with SMI. Attempts to increase patient uptake of PADs should circumvent risks of undue provider influence in the facilitation process and promote optimal mental health outcomes with a peer-support model, thereby protecting patient autonomy per the principle of beneficence. Additionally, policymakers and mental health organizations should devote sufficient resources toward establishing peer-support specialist networks to mitigate the inequities those with SMI face. Capability theory can guide state leaders and directors in justifying the distribution of scarce resources to achieve these outcomes. I. System-Level Barriers to Psychiatric Advanced Directive Uptake At least three barriers to PAD uptake exist at the system level. Still, only one can be effectively addressed by peer-support specialists: resource implications to providers and administrators.[14] In one study, 71 percent of administrators and 52 percent of clinicians believed that a shortage of time would prevent adequate facilitation of PAD completion among those with SMI.[15] Logistical difficulties, such as incorporation into routine documentation and making them easily accessible, were mentioned by 25 percent of respondents in another study.[16] Professionals should take clinical burdens seriously since they can impact care and patient outcomes. Shifting to a peer-support model would alleviate these constraints on providers, who could then focus on other aspects of patient care. II. Health Professional-Level Barriers to Psychiatric Advance Directive Uptake Barriers at the health-professional level, which include a lack of knowledge and training, fear of complete treatment refusals, and a reluctance to facilitate PAD creation, keep patient uptake of PADs low.[17] Among these barriers is a need for more knowledge and training among healthcare professionals. In one study, 55 percent of health professionals had never heard of PADs; only 11 percent claimed they were "very familiar" with PADs.[18] In a survey of professionals, 45 percent voiced concern that the potential disadvantages such as the use of PADs to refuse medications could outweigh the benefits.[19] The reluctance of providers to assist service users in completing a PAD stemmed from concerns over time constraints and the providers’ ability to facilitate the completion of a PAD without bias.[20] These concerns are serious and hint at the asymmetrical power dynamic between providers and patients. By removing the responsibility of unbiased communication from the provider and placing it with peer-support facilitators, the risk to patient autonomy would be significantly lessened. III. Service User-Level Barriers to Psychiatric Advance Directive Uptake Several barriers exist at the service-user level that prevent the widespread adoption of PADs. These include a lack of trust, support, and knowledge of PADs, as well as a lack of understanding in completing a PAD.[21] Concerning trust, one study found that 43 percent of patients did not feel they had someone they could trust to help them complete their PAD.[22] Other studies indicated that patients had limited trust in their healthcare professionals.[23] Regarding the lack of support, one survey found that 94 percent of respondents would be unable to complete a PAD without assistance or without a facilitator.[24] Many patients lack knowledge and awareness of PADs, how to complete, and what to include in them.[25] Due to their complex legal nature, over half of the respondents in one survey indicated that they had problems understanding the PAD.[26] Similarly, 79 percent of clients interviewed in one study felt that PADs posed too much of a burden.[27] Through their shared lived experience, peer-support facilitators would be in a greater position to foster trust with patients and create the environment necessary for patients to explore their values and preferences through this process. IV. Circumventing Undue Provider Influence on Patient Autonomy The risk to patient autonomy is pervasive because of the advanced nature of medical practice and the dependence of patients to providers. In their delineation of bioethical principles, Beauchamp and Childress state: "To respect autonomous agents is to acknowledge their right to hold views, to make choices, and to take actions based on their values and beliefs."[28] This duty extends through a respectful attitude toward the patient and respectful action toward the patient.[29] On average, patients with SMI take 14.6 minutes to complete a PAD, which is well within the 30-minute time limit imposed by insurance reimbursement schedules.[30] However, as other researchers have indicated, this time of completion does not take into account the time required to inform and discuss the implications of future treatment decisions adequately.[31] Given that those living with SMI are often affected by cognitive deficits, the ability of a provider to relay complex health and legal information promptly may be further hamstrung.[32] By offloading the burden of providing efficient and practical education to patients with various levels of cognitive impairment, peer-support specialists could provide the necessary space and time to obtain informed consent and protect patient autonomy. Much of the moral force behind advance directives is the respect for patient autonomy, which has been a focus of researchers over the past several years.[33] Because psychiatric episodes severely limit the ability of a patient to make well-informed treatment decisions in a crisis, PADs are a way to protect the patient from paternalistic interventions. This takes on greater weight in treating patients experiencing a psychiatric episode when the threat and use of coercive treatment options are frequent.[34] Moreover, a report in North Carolina has uncovered a "culture of commitment" whereby providers routinely and reflexively override patient PADs through the legal execution of involuntary commitment.[35] This is despite the affirmation of the autonomy of psychiatric patients by the US District Court in Vermont, which concluded in Hargrave v. Vermont that clinicians could not overrule written directives regarding mental health treatment in non-emergency situations.[36] Although the invalidation of a PAD occurs during treatment, well after discussing and creating it, providers holding the view that PADs are of little utility may not accurately or effectively discuss their relevant features with patients. However, this issue could be side-stepped entirely with peer-support specialists who would be responsible for obtaining informed consent from the patient within the value structures espoused by the patient. V. Beneficence Through Peer Support A growing amount of research indicates how peer-support facilitation of PADs can improve the mental health outcomes of those with SMI. Studies show that adults with SMI can complete legally valid PADs with appropriate assistance and that these documents faithfully represent their preferences.[37] At a minimum, service users report no bias against peer specialists in facilitating PADs.[38] Peer-support specialists use their lived experience to foster empowerment among patients, serve as role models, and promote a patient-centered process in successful PAD completion.[39] Mitigating concerns from providers that PAD creation would include complete refusal of treatment, other studies have found that peer-facilitated PADs were significantly more likely to be prescriptive than PADs facilitated by non-peer clinicians.[40] Most importantly, peer-facilitated PADs effectively decrease compulsory hospital admissions and increase mental health outcomes such as self-perceived symptoms, empowerment, and recovery.[41] Providers have a prima facie duty to prevent harm from occurring to others, remove conditions that will cause harm to others, and help persons with disabilities.[42] This is often conceptualized within the patient-provider relationship, but it need not be. Although general beneficence is controversial in ethics circles, providers can promote the welfare of those they may never meet by relinquishing the responsibility of PAD facilitation to peer-support specialists.[43] In doing so, they remove the possibility of unduly influencing patient preferences, thereby reducing the risk of harm. Additionally, providers incur no additional costs, ameliorating concerns that they do not have the time or resources to facilitate PAD creation effectively.[44] Additionally, they would be implicitly endorsing a better treatment option, allowing them to meet the prima facie obligation to help persons with disabilities. VI. Relational Autonomy and Informed Consent in PAD Creation Shifting the burden of PAD facilitation from providers to peer-support specialists may not settle questions of undue influence. However, under their own SMI, peer-support specialists have lived experiences that strongly parallel others with SMI, which may augment patient autonomy overall. In support of this relational turn, Susan H. Williams explains: "Once the social sources of our identities are recognized, it becomes apparent that someone else who shares my culture [experience] might be able to understand me better than I understand myself.” [45] Essentially, the lived experience of peer-support specialists does not necessarily impede autonomy but can effectively enhance it through facilitated support.[46] Recognizing that individuals are embedded in social relations makes it clear that conceptions of autonomy that neglect emotions, communal life, social context, interdependence, reciprocity, and the development of persons over time are exceedingly narrow.[47] Within this framework of relational autonomy, peer-support specialists can guide service users through their struggles with SMI. So long as the interaction allows service users to act intentionally, with understanding, and without external influences, professionals can respect an individual's autonomy.[48] The enhancement in service-user autonomy ultimately arises from the relationship and shared experience with the peer-support specialist. Of course, peer-support specialists would be obligated to the affirmative duties necessary to ensure service users' understanding and informed consent. Peer-support specialists can achieve informed consent through a certification procedure and a manualized structured conversation that guides the patient to understand their preferences better.[49] To achieve informed consent, "the patient must have the capacity to be able to understand and assess the information given, communicate their choices, and understand the consequences of their decision.”[50] To this end, professionals must train peer-support specialists to apply standards of competence to service users prior to PAD facilitation. Although intervening with peer-support specialists can yield substantial benefits—including fewer coercive interventions, a better-working alliance with care providers, and higher odds that individuals will receive and adhere to their preferred medications— professionals must reach informed consent during each facilitation session.[51] VII. Guiding Distributive Justice: Capability Theory Capability theory is an account of justice opportunity that places a fundamental moral significance on individuals' ability to reach proper functioning and well-being.[52] Whether or not an individual can make use of a particular set of resources and convert them into a state of functioning depends on personal, sociopolitical, and environmental conditions ("conversion factors").[53] In this sense, liberty is not the absence of restraint from others or institutions but the freedom achieved through capability-enhancing relationships.[54] Within the context of bioethics, capability theory shifts focus toward creating circumstances by which individuals can direct their lives as they choose.[55] Acting in accordance with the principle of beneficence, peer-support specialists could enhance the capability of patients to be self-determined and autonomous, which would promote patient well-being and empowerment.[56] Those living with SMI, such as schizophrenia and bipolar disorder, are among the most disadvantaged in society, experiencing social and economic hardship related to their illness.[57] These individuals are often feared and rejected by others, which increases depression, lowers self-esteem, and engenders feelings of social isolation.[58] Compounding their challenges, especially for those facing structural inequalities, is insufficient access to appropriate mental health services supporting recovery.[59] Capability theory provides a sound justification for the resource distribution necessary to create and sustain a thriving network of peer-support specialists, to which those with SMI currently do not have access. Establishing this conversion factor would increase the uptake of PADs and motivate continued engagement in treatment, which is crucial for patients with SMI.[60] Governments and private and public mental healthcare organizations should prioritize establishing peer-support facilitator networks to provide those living with SMI with this much-needed resource. Funding should be directed to train peer-support specialists so that available treatment options are clearly communicated and informed consent is achieved. NAMI Peer-to-Peer and Integral Care (Travis County) Peer Support Specialists may provide effective support models. However, policymakers should take note of Virginia's facilitation model implementation efforts and consider potential roadblocks at the state and local levels.[61] Additionally, investment should be made into a nationwide PAD repository that providers can access electronically during intake so that patient preferences are respected throughout treatment. CONCLUSION Those living with severe mental illness experience disproportional disadvantages that limit their ability to access mental health resources that protect their autonomy during a crisis. These disadvantages should be acknowledged and addressed with the creation and sufficient funding of peer-support specialist networks to help these individuals complete and execute psychiatric advance directives during treatment. Efforts that attempt to promote psychiatric advance directive facilitation through providers risk undue influence and poor mental health outcomes, despite the duties of non-maleficence and beneficence. While different models may be explored, peer-support specialists can leverage the advantages of their shared lived experience with patients within a framework of relational autonomy following the principle of beneficence. Capability theory offers state, local, and organizational leaders’ guidance in promoting and justifying peer-support specialist networks, which protect patient autonomy, increase well-being, and decrease harm. PERSONAL PERSPECTIVE As someone who has voluntarily been admitted to a psychiatric health facility twice to treat manic episodes stemming from Bipolar I Disorder, I recognize the autonomy-persevering utility of psychiatric advance directives on a theoretical and experiential level. Through my research and the benefit of hindsight, I believe that a psychiatric advance directive could have facilitated my treatment regimens and perhaps mitigated some of the depersonalization and lack of control I felt. This experience informs my approach and contribution to the academic conversation surrounding the systematic barriers and ethical dilemmas preventing the widespread use of psychiatric advance directives. - [1] Madison K. Kilbride and Steven Joffe, "The New Age of Patient Autonomy," JAMA 320, no. 19 (2018): 1973-1974, https://doi.org/10.1001/jama.2018.14382. [2] Kilbride and Joffe, "The New Age of Patient," 1973-1974. [3] Patient Self-Determination Act, H.R. Res. 5067, 101st Cong. (Nov. 5, 1990) (enacted). [4] Billy Table, Jaime Thomas, and Virginia A. Brown, "Psychiatric Advance Directives as an Ethical Communication Tool: An Analysis of Definitions," The Journal of Clinical Ethics 31, no. 3 (2020): [353-363] [5] Heather Murray and Hal S. Wortzel, "Psychiatric Advance Directives: Origins, Benefits, Challenges, and Future Directions," Journal of Psychiatric Practice 25, no. 4 (2019): 303-307, https://doi.org/10.1097/PRA.0000000000000401. [6] Table, Thomas, and Brown, "Psychiatric Advance," 353-363. [7] J. Swanson et al., "Psychiatric Advance Directives among Public Mental Health Consumers in Five U.S. Cities: Prevalence, Demand, and Correlates.," The Journal of the American Academy of Psychiatry and the Law 34, no. 1 (2006): 43-57. [8] Swanson et al., "Psychiatric Advance," 43-57. [9] Laura S. Shields et al., "A Review of Barriers to Using Psychiatric Advance Directives in Clinical Practice," Administration and Policy in Mental Health and Mental Health Services Research 41, no. 6 (2013): 753-766, https://doi.org/10.1007/s10488-013-0523-3. [10] Charles M. Belden et al., "Appropriateness of Psychiatric Advance Directives Facilitated by Peer Support Specialists and Clinicians on Assertive Community Treatment Teams," Journal of Mental Health 31, no. 2 (2021): 239-245, https://doi.org/10.1080/09638237.2021.1952946.; Shields et al., "A Review," 753-766. [11] Tracy Peto et al., "Support Needed to Create Psychiatric Advance Directives," Administration and Policy in Mental Health 31, no. 5 (2004): 409-419, http://ezproxy.lib.utexas.edu/login?url=https://www.proquest.com/scholarly-journals/support-needed-create-psychiatric-advance/docview/210976273/se-2?accountid=7118. [12] Rachel C. Conrad et al., "Duties toward Patients with Psychiatric Illness," Hastings Center Report 50, no. 3 (2020): 67-69, https://doi.org/10.1002/hast.1139. [13] Murray and Wortzel, "Psychiatric Advance," 303-307. [14] Shields et al., "A Review," 753-766. [15] Christine M. Wilder et al., "A Survey of Stakeholder Knowledge, Experience, and Opinions of Advance Directives for Mental Health in Virginia," Administration and Policy in Mental Health and Mental Health Services Research 40, no. 3 (2013): 232-239, https://doi.org/10.1007/s10488-011-0401-9. [16] Maria J. O’Connell and Catherine H. Stein, "Psychiatric Advance Directives: Perspectives of Community Stakeholders," Administration and Policy in Mental Health 32, no. 3 (2005): 241-265, https://doi.org/10.1007/s10488-004-0843-4. [17] Shields et al., "A Review," 753-766. [18] O’Connell and Stein, "Psychiatric Advance," 241-265. [19] Eric B. Elbogen et al., "Clinical Decision Making and Views about Psychiatric Advance Directives," Psychiatric Services 57, no. 3 (2006): 350-355, https://doi.org/10.1176/appi.ps.57.3.350. [20] Debra Srebnik and Lisa Brodoff, "Implementing Psychiatric Advance Directives: Service Provider Issues and Answers," The Journal of Behavioral Health Services & Research 30, no. 3 (2003): 253-268, https://doi.org/10.1007/BF02287316.; I. Varekamp, "Ulysses Directives in the Netherlands: Opinions of Psychiatrists and Clients," Health Policy 70, no. 3 (2004): 291-301, https://doi.org/10.1016/j.healthpol.2004.03.003. [21] Shields et al., "A Review," 753-766. [22] Richard A. Van Dorn, Jeffrey W. Swanson, and Marvin S. Swartz, "Preferences for Psychiatric Advance Directives among Latinos: Views on Advance Care Planning for Mental Health," Psychiatric Services 60, no. 10 (2009): 1383-1385, https://doi.org/10.1176/ps.2009.60.10.1383. [23] Jeffrey W. Swanson et al., "Psychiatric Advance Directives: A Survey of Persons with Schizophrenia, Family Members, and Treatment Providers," International Journal of Forensic Mental Health 2, no. 1 (2003): 73-86, https://doi.org/10.1080/14999013.2003.10471180. [24] Eric B. Elbogen et al., "Effectively Implementing Psychiatric Advance Directives to Promote Self-determination of Treatment among People with Mental Illness.," Psychology, Public Policy, and Law 13, no. 4 (2007): 273-288, https://doi.org/10.1037/1076-8971.13.4.273. [25] Shields et al., "A Review," 753-766. [26] Marvin S. Swartz et al., "Patient Preferences for Psychiatric Advance Directives," International Journal of Forensic Mental Health 5, no. 1 (2006): 67-81, https://doi.org/10.1080/14999013.2006.10471231. [27] Richard A. Van Dorn et al., "Reducing Barriers to Completing Psychiatric Advance Directives," Administration and Policy in Mental Health and Mental Health Services Research 35, no. 6 (2008): 440-448, https://doi.org/10.1007/s10488-008-0187-6. [28] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (n.p.: Oxford University Press, 2019). [29] Beauchamp and Childress, Principles of Biomedical. [30] Sharad Philip et al., "EAT-PAD: Educating about Psychiatric Advance Directives in India," International Journal of Social Psychiatry 65, no. 3 (2019): 207-216, https://doi.org/10.1177/0020764019834591. [31] Table, Thomas, and Brown, "Psychiatric Advance," 353-363. [32] Julia M. Sheffield, Nicole R. Karcher, and Deanna M. Barch, "Cognitive Deficits in Psychotic Disorders: A Lifespan Perspective," Neuropsychology Review 28, no. 4 (2018): 509, https://doi.org/10.1007/s11065-018-9388-2. [33] Stavroula Tsinorema, "The Principle of Autonomy and the Ethics of Advance Directives," Synthesis Philosophica 59, no. 1 (2015). [34] Marie Chieze et al., "Coercive Measures in Psychiatry: A Review of Ethical Arguments," Frontiers in Psychiatry 12 (2021): https://doi.org/10.3389/fpsyt.2021.790886. [35] Taylor Knopf, "Health Providers Sometimes Ignore Mental Health Patients' Documented Wishes during Treatment," NC Health News, last modified February 7, 2023, https://www.northcarolinahealthnews.org/2023/02/07/health-providers-sometimes-ignore-mental-health-patients-documented-wishes-during-treatment/. [36] Diane McDevitt, "Psychiatric Advance Directives," The Nurse Practitioner 45, no. 4 (2020): 10-13, https://doi.org/10.1097/01.NPR.0000657304.67256.E5. [37] Marvin S. Swartz et al., "Implementing Psychiatric Advance Directives: The Transmitter and Receiver Problem and the Neglected Right to Be Deemed Incapable," Psychiatric Services 72, no. 2 (2021): 219-221, https://doi.org/10.1176/appi.ps.202000659. [38] Michele M. Easter et al., "Impact of Psychiatric Advance Directive Facilitation on Mental Health Consumers: Empowerment, Treatment Attitudes and the Role of Peer Support Specialists," Journal of Mental Health 30, no. 5 (2020): 585-593, https://doi.org/10.1080/09638237.2020.1714008. [39] Michele M. Easter et al., "Facilitation of Psychiatric Advance Directives by Peers and Clinicians on Assertive Community Treatment Teams," Psychiatric Services 68, no. 7 (2017): 717-723, https://doi.org/10.1176/appi.ps.201600423. [40] Belden et al., "Appropriateness of Psychiatric," 239-245. [41] Aurélie Tinland et al., "Effect of Psychiatric Advance Directives Facilitated by Peer Workers on Compulsory Admission among People with Mental Illness," JAMA Psychiatry 79, no. 8 (2022): 752, https://doi.org/10.1001/jamapsychiatry.2022.1627. [42] Beauchamp and Childress, Principles of Biomedical. [43] Beauchamp and Childress, Principles of Biomedical. [44] Shields et al., "A Review," 753-766. [45] Williams, "Comment: Autonomy and the Public-private Distinction in Bioethics and Law," Indiana Journal of Global Legal Studies 12, no. 2 (2005): 483, https://doi.org/10.2979/gls.2005.12.2.483. [46] Carlos Gómez-Vírseda, Yves De Maeseneer, and Chris Gastmans, "Relational Autonomy: What Does It Mean and How Is It Used in End-of-life Care? A Systematic Review of Argument-based Ethics Literature.," BMC Medical Ethics 20, no. 1 (2019): 76, https://doi.org/10.1186/s12910-019-0417-3. [47] Beauchamp and Childress, Principles of Biomedical. [48] Beauchamp and Childress, Principles of Biomedical. [49] Easter et al., "Facilitation of Psychiatric," 717-723. [50] Christine S. Cocanour, "Informed Consent-It's More than a Signature on a Piece of Paper," The American Journal of Surgery 214, no. 6 (2017): 993-997, https://doi.org/10.1016/j.amjsurg.2017.09.015. [51] Easter et al., "Facilitation of Psychiatric," 717-723. [52] Beauchamp and Childress, Principles of Biomedical. [53] Ingrid Robeyns and Morten Fibieger Byskov, "The Capability Approach," Stanford Encyclopedia of Philosophy, last modified December 10, 2020, https://plato.stanford.edu/entries/capability-approach/#toc. [54] Bruce Jennings, "Reconceptualizing Autonomy: A Relational Turn in Bioethics," Hastings Center Report 46, no. 3 (2016): 11-16, https://doi.org/10.1002/hast.544. [55] Beauchamp and Childress, Principles of Biomedical. [56] Easter et al., "Impact of Psychiatric," 585-593. [57] Amy J. 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This article explores resilience as it is experienced by refugees in the context of a relational community, visiting the notions of trauma, a thicker description of resilience and the trajectory toward positive growth through community. It calls for going beyond a Western biomedical therapeutic approach of exploration and adopting more of an emic perspective incorporating the worldview of the refugees. The challenge is for service providers working with refugees (who have experienced trauma) to move forward from a ‘harm minimisation’ model of care to recognition of a facilitative, productive community of people who are in a transitional phase between homelands. Contextualising Trauma Prior to the 1980s, the term ‘trauma’ was not widely used in literature on refugees and refugee mental health, hardly existing as a topic of inquiry until the mid-1980’s (Summerfield 422). It first gained prominence in relation to soldiers who had returned from Vietnam and in need of medical attention after being traumatised by war. The term then expanded to include victims of wars and those who had witnessed traumatic events. Seahorn and Seahorn outline that severe trauma “paralyses you with numbness and uses denial, avoidance, isolation as coping mechanisms so you don’t have to deal with your memories”, impacting a person‘s ability to risk being connected to others, detaching and withdrawing; resulting in extreme loneliness, emptiness, sadness, anxiety and depression (6). During the Civil War in the USA the impact of trauma was referred to as Irritable Heart and then World War I and II referred to it as Shell Shock, Neurosis, Combat Fatigue, or Combat Exhaustion (Seahorn & Seahorn 66, 67). During the twenty-five years following the Vietnam War, the medicalisation of trauma intensified and Post Traumatic Stress Disorder (PTSD) became recognised as a medical-psychiatric disorder in 1980 in the American Psychiatric Association international diagnostic tool Diagnostic Statistical Manual (DSM–III). An expanded description and diagnosis of PTSD appears in the DSM-IV, influenced by the writings of Harvard psychologist and scholar, Judith Herman (Scheper-Hughes 38) The Diagnostic and Statistical Manual (DSM-IV) of Mental Disorders (American Psychiatric Association, 2000) outlines that experiencing the threat of death, injury to oneself or another or finding out about an unexpected or violent death, serious harm, or threat of the same kind to a family member or close person are considered traumatic events (Chung 11); including domestic violence, incest and rape (Scheper-Hughes 38). Another significant development in the medicalisation of trauma occurred in 1998 when the Victorian Foundation for Survivors of Torture (VFST) released an influential report titled ‘Rebuilding Shattered Lives’. This then gave clinical practice a clearer direction in helping people who had experienced war, trauma and forced migration by providing a framework for therapeutic work. The emphasis became strongly linked to personal recovery of individuals suffering trauma, using case management as the preferred intervention strategy. A whole industry soon developed around medical intervention treating people suffering from trauma related problems (Eyber). Though there was increased recognition for the medicalised discourse of trauma and post-traumatic stress, there was critique of an over-reliance of psychiatric models of trauma (Bracken, et al. 15, Summerfield 421, 423). There was also expressed concern that an overemphasis on individual recovery overlooked the socio-political aspects that amplify trauma (Bracken et al. 8). The DSM-IV criteria for PTSD model began to be questioned regarding the category of symptoms being culturally defined from a Western perspective. Weiss et al. assert that large numbers of traumatized people also did not meet the DSM-III-R criteria for PTSD (366). To categorize refugees’ experiences into recognizable, generalisable psychological conditions overlooked a more localized culturally specific understanding of trauma. The meanings given to collective experience and the healing strategies vary across different socio-cultural groupings (Eyber). For example, some people interpret suffering as a normal part of life in bringing them closer to God and in helping gain a better understanding of the level of trauma in the lives of others. Scheper-Hughes raise concern that the PTSD model is “based on a conception of human nature and human life as fundamentally vulnerable, frail, and humans as endowed with few and faulty defence mechanisms”, and underestimates the human capacity to not only survive but to thrive during and following adversity (37, 42). As a helping modality, biomedical intervention may have limitations through its lack of focus regarding people’s agency, coping strategies and local cultural understandings of distress (Eyber). The benefits of a Western therapeutic model might be minimal when some may have their own culturally relevant coping strategies that may vary to Western models. Bracken et al. document case studies where the burial rituals in Mozambique, obligations to the dead in Cambodia, shared solidarity in prison and the mending of relationships after rape in Uganda all contributed to the healing process of distress (8). Orosa et al. (1) asserts that belief systems have contributed in helping refugees deal with trauma; Brune et al. (1) points to belief systems being a protective factor against post-traumatic disorders; and Peres et al. highlight that a religious worldview gives hope, purpose and meaning within suffering. Adopting a Thicker Description of Resilience Service providers working with refugees often talk of refugees as ‘vulnerable’ or ‘at risk’ populations and strive for ‘harm minimisation’ among the population within their care. This follows a critical psychological tradition, what (Ungar, Constructionist) refers to as a positivist mode of inquiry that emphasises the predictable relationship between risk and protective factors (risk and coping strategies) being based on a ‘deficient’ outlook rather than a ‘future potential’ viewpoint and lacking reference to notions of resilience or self-empowerment (342). At-risk discourses tend to focus upon antisocial behaviours and appropriate treatment for relieving suffering rather than cultural competencies that may be developing in the midst of challenging circumstances. Mares and Newman document how the lives of many refugee advocates have been changed through the relational contribution asylum seekers have made personally to them in an Australian context (159). Individuals may find meaning in communal obligations, contributing to the lives of others and a heightened solidarity (Wilson 42, 44) in contrast to an individual striving for happiness and self-fulfilment. Early naturalistic accounts of mental health, influenced by the traditions of Western psychology, presented thin descriptions of resilience as a quality innate to individuals that made them invulnerable or strong, despite exposure to substantial risk (Ungar, Thicker 91). The interest then moved towards a non-naturalistic contextually relevant understanding of resilience viewed in the social context of people’s lives. Authors such as Benson, Tricket and Birman (qtd. in Ungar, Thicker) started focusing upon community resilience, community capacity and asset-building communities; looking at areas such as - “spending time with friends, exercising control over aspects of their lives, seeking meaningful involvement in their community, attaching to others and avoiding threats to self-esteem” (91). In so doing far more emphasis was given in developing what Ungar (Thicker) refers to as ‘a thicker description of resilience’ as it relates to the lives of refugees that considers more than an ability to survive and thrive or an internal psychological state of wellbeing (89). Ungar (Thicker) describes a thicker description of resilience as revealing “a seamless set of negotiations between individuals who take initiative, and an environment with crisscrossing resources that impact one on the other in endless and unpredictable combinations” (95). A thicker description of resilience means adopting more of what Eyber proposes as an emic approach, taking on an ‘insider perspective’, incorporating the worldview of the people experiencing the distress; in contrast to an etic perspective using a Western biomedical understanding of distress, examined from a position outside the social or cultural system in which it takes place. Drawing on a more anthropological tradition, intervention is able to be built with local resources and strategies that people can utilize with attention being given to cultural traditions within a socio-cultural understanding. Developing an emic approach is to engage in intercultural dialogue, raise dilemmas, test assumptions, document hopes and beliefs and explore their implications. Under this approach, healing is more about developing intelligibility through one’s own cultural and social matrix (Bracken, qtd. in Westoby and Ingamells 1767). This then moves beyond using a Western therapeutic approach of exploration which may draw on the rhetoric of resilience, but the coping strategies of the vulnerable are often disempowered through adopting a ‘therapy culture’ (Furedi, qtd. in Westoby and Ingamells 1769). Westoby and Ingamells point out that the danger is by using a “therapeutic gaze that interprets emotions through the prism of disease and pathology”, it then “replaces a socio-political interpretation of situations” (1769). This is not to dismiss the importance of restoring individual well-being, but to broaden the approach adopted in contextualising it within a socio-cultural frame. The Relational Aspect of Resilience Previously, the concept of the ‘resilient individual’ has been of interest within the psychological and self-help literature (Garmezy, qtd. in Wilson) giving weight to the aspect of it being an innate trait that individuals possess or harness (258). Yet there is a need to explore the relational aspect of resilience as it is embedded in the network of relationships within social settings. A person’s identity and well-being is better understood in observing their capacity to manage their responses to adverse circumstances in an interpersonal community through the networks of relationships. Brison, highlights the collective strength of individuals in social networks and the importance of social support in the process of recovery from trauma, that the self is vulnerable to be affected by violence but resilient to be reconstructed through the help of others (qtd. in Wilson 125). This calls for what Wilson refers to as a more interdisciplinary perspective drawing on cultural studies and sociology (2). It also acknowledges that although individual traits influence the action of resilience, it can be learned and developed in adverse situations through social interactions. To date, within sociology and cultural studies, there is not a well-developed perspective on the topic of resilience. Resilience involves a complex ongoing interaction between individuals and their social worlds (Wilson 16) that helps them make sense of their world and adjust to the context of resettlement. It includes developing a perspective of people drawing upon negative experiences as productive cultural resources for growth, which involves seeing themselves as agents of their own future rather than suffering from a sense of victimhood (Wilson 46, 258). Wilson further outlines the display of a resilience-related capacity to positively interpret and derive meaning from what might have been otherwise negative migration experiences (Wilson 47). Wu refers to ‘imagineering’ alternative futures, for people to see beyond the current adverse circumstances and to imagine other possibilities. People respond to and navigate their experience of trauma in unique, unexpected and productive ways (Wilson 29). Trauma can cripple individual potential and yet individuals can also learn to turn such an experience into a positive, productive resource for personal growth. Grief, despair and powerlessness can be channelled into hope for improved life opportunities. Social networks can act as protection against adversity and trauma; meaningful interpersonal relationships and a sense of belonging assist individuals in recovering from emotional strain. Wilson asserts that social capabilities assist people in turning what would otherwise be negative experiences into productive cultural resources (13). Graybeal (238) and Saleeby (297) explore resilience as a strength-based practice, where individuals, families and communities are seen in relation to their capacities, talents, competencies, possibilities, visions, values and hopes; rather than through their deficiencies, pathologies or disorders. This does not present an idea of invulnerability to adversity but points to resources for navigating adversity. Resilience is not merely an individual trait or a set of intrinsic behaviours that can be displayed in ‘resilient individuals’. Resilience, rather than being an unchanging attribute, is a complex socio-cultural phenomenon, a relational concept of a dynamic nature that is situated in interpersonal relations (Wilson 258). Positive Growth through a Community Based Approach Through migrating to another country (in the context of refugees), Falicov, points out that people often experience a profound loss of their social network and cultural roots, resulting in a sense of homelessness between two worlds, belonging to neither (qtd. in Walsh 220). In the ideological narratives of refugee movements and diasporas, the exile present may be collectively portrayed as a liminality, outside normal time and place, a passage between past and future (Eastmond 255). The concept of the ‘liminal’ was popularised by Victor Turner, who proposed that different kinds of marginalised people and communities go through phases of separation, ‘liminali’ (state of limbo) and reincorporation (qtd. in Tofighian 101). Difficulties arise when there is no closure of the liminal period (fleeing their former country and yet not being able to integrate in the country of destination). If there is no reincorporation into mainstream society then people become unsettled and feel displaced. This has implications for their sense of identity as they suffer from possible cultural destabilisation, not being able to integrate into the host society. The loss of social supports may be especially severe and long-lasting in the context of displacement. In gaining an understanding of resilience in the context of displacement, it is important to consider social settings and person-environment transactions as displaced people seek to experience a sense of community in alternative ways. Mays proposed that alternative forms of community are central to community survival and resilience. Community is a source of wellbeing for building and strengthening positive relations and networks (Mays 590). Cottrell, uses the concept of ‘community competence’, where a community provides opportunities and conditions that enable groups to navigate their problems and develop capacity and resourcefulness to cope positively with adversity (qtd. in Sonn and Fisher 4, 5). Chaskin, sees community as a resilient entity, countering adversity and promoting the well-being of its members (qtd. in Canavan 6). As a point of departure from the concept of community in the conventional sense, I am interested in what Ahmed and Fortier state as moments or sites of connection between people who would normally not have such connection (254). The participants may come together without any presumptions of ‘being in common’ or ‘being uncommon’ (Ahmed and Fortier 254). This community shows little differentiation between those who are welcome and those who are not in the demarcation of the boundaries of community. The community I refer to presents the idea as ‘common ground’ rather than commonality. Ahmed and Fortier make reference to a ‘moral community’, a “community of care and responsibility, where members readily acknowledge the ‘social obligations’ and willingness to assist the other” (Home office, qtd. in Ahmed and Fortier 253). Ahmed and Fortier note that strong communities produce caring citizens who ensure the future of caring communities (253). Community can also be referred to as the ‘soul’, something that stems out of the struggle that creates a sense of solidarity and cohesion among group members (Keil, qtd. in Sonn and Fisher 17). Often shared experiences of despair can intensify connections between people. These settings modify the impact of oppression through people maintaining positive experiences of belonging and develop a positive sense of identity. This has enabled people to hold onto and reconstruct the sociocultural supplies that have come under threat (Sonn and Fisher 17). People are able to feel valued as human beings, form positive attachments, experience community, a sense of belonging, reconstruct group identities and develop skills to cope with the outside world (Sonn and Fisher, 20). Community networks are significant in contributing to personal transformation. Walsh states that “community networks can be essential resources in trauma recovery when their strengths and potential are mobilised” (208). Walsh also points out that the suffering and struggle to recover after a traumatic experience often results in remarkable transformation and positive growth (208). Studies in post-traumatic growth (Calhoun & Tedeschi) have found positive changes such as: the emergence of new opportunities, the formation of deeper relationships and compassion for others, feelings strengthened to meet future life challenges, reordered priorities, fuller appreciation of life and a deepening spirituality (in Walsh 208). As Walsh explains “The effects of trauma depend greatly on whether those wounded can seek comfort, reassurance and safety with others. Strong connections with trust that others will be there for them when needed, counteract feelings of insecurity, hopelessness, and meaninglessness” (208). Wilson (256) developed a new paradigm in shifting the focus from an individualised approach to trauma recovery, to a community-based approach in his research of young Sudanese refugees. Rutter and Walsh, stress that mental health professionals can best foster trauma recovery by shifting from a predominantly individual pathology focus to other treatment approaches, utilising communities as a capacity for healing and resilience (qtd. in Walsh 208). Walsh highlights that “coming to terms with traumatic loss involves making meaning of the trauma experience, putting it in perspective, and weaving the experience of loss and recovery into the fabric of individual and collective identity and life passage” (210). Landau and Saul, have found that community resilience involves building community and enhancing social connectedness by strengthening the system of social support, coalition building and information and resource sharing, collective storytelling, and re-establishing the rhythms and routines of life (qtd. in Walsh 219). Bracken et al. suggest that one of the fundamental principles in recovery over time is intrinsically linked to reconstruction of social networks (15). This is not expecting resolution in some complete ‘once and for all’ getting over it, getting closure of something, or simply recovering and moving on, but tapping into a collective recovery approach, being a gradual process over time. Conclusion A focus on biomedical intervention using a biomedical understanding of distress may be limiting as a helping modality for refugees. Such an approach can undermine peoples’ agency, coping strategies and local cultural understandings of distress. Drawing on sociology and cultural studies, utilising a more emic approach, brings new insights to understanding resilience and how people respond to trauma in unique, unexpected and productive ways for positive personal growth while navigating the experience. This includes considering social settings and person-environment transactions in gaining an understanding of resilience. Although individual traits influence the action of resilience, it can be learned and developed in adverse situations through social interactions. Social networks and capabilities can act as a protection against adversity and trauma, assisting people to turn what would otherwise be negative experiences into productive cultural resources (Wilson 13) for improved life opportunities. The promotion of social competence is viewed as a preventative intervention to promote resilient outcomes, as social skill facilitates social integration (Nettles and Mason 363). As Wilson (258) asserts that resilience is not merely an individual trait or a set of intrinsic behaviours that ‘resilient individuals’ display; it is a complex, socio-cultural phenomenon that is situated in interpersonal relations within a community setting. References Ahmed, Sara, and Anne-Marie Fortier. “Re-Imagining Communities.” International of Cultural Studies 6.3 (2003): 251-59. Bracken, Patrick. J., Joan E. Giller, and Derek Summerfield. Psychological Response to War and Atrocity: The Limitations of Current Concepts. 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