Therapeutic Self-Portraiture: finding a sense of self during the Pandemic

Background Acquired Brain injury (ABI) causes ripples throughout the occupational and social fabric. It enters people’s lives at a significant personal cost, encroaching on people’s sense of self. Vocational rehabilitation is a viable venue to regain control of their life and support them in forming a new sense of self. From an occupational perspective, little is known about how vocational rehabilitation can support people through transforming their sense of self. Aim This study aims to explore how vocational rehabilitation may influence the relationship between sense of self and occupational engagement for persons with ABI. Material and Methods: Six persons with ABI were purposely sampled. Data were collected using semi-structured individual interviews and analysed using a hermeneutic approach. Results The analysis resulted in three themes: a new sense of my former self, engaging in occupations as transformation, and the significance of support. Conclusions Participating in vocational rehabilitation can enable persons with ABI to form a new sense of self. Engaging in occupations and professional support is significant in the transformation process. Significance From an occupational perspective, the knowledge gained in this study stresses the essential role occupational engagement and proper targeted support have for people struggling to return to work after ABI.

This paper deals with the question concerning the effects of the sense of self on agency, particularly the implications that a disharmonious sense of self can have for agency. Consciousness, as intimately connected with a sense of self has a unique status in being accessible both from a first-person and a third-person perspective. A study of self therefore requires phenomenological approaches as well as neurological, psychological or sociological ones. A promising approach to understanding how the sense of self affects agency is studying pathologies. Such studies support the view that both the sense and the conception of self as unified and as an initiator of agency are valued, while a sense of conflict or dissonance is avoided. The frequency with which confabulations occur in pathologies of self can be taken as an indicator that distortions of perception, memory and narration are considered a fair price to pay to counteract a sense of diffused self. The picture or narrative of the self that is thereby produced necessarily involves a sense of what the individual regards as good. However a strong urge to maintain an idealised, unified and stable picture of self and agency may involve the danger that mechanisms used against a diffusion of the self misrepresent both self and the other.

BackgroundPhenomenological researchers argue that schizophrenia is first and foremost a disorder of the basic sense of self (also known as ipsity, minimal or core self), that is, of the immediate, pre-reflective, embodied sense of being immersed in the world. According to the self-disorder model, impairment of the basic sense of self precedes clinical symptoms and is independent of them. Therefore, we postulated that youth at high psychometric risk for developing schizophrenia would present an impairment in their basic sense of self, as measured by levels of ego strength, basic symptoms, and pronoun usage.MethodsEighty undergraduate students aged 19–22 years (M = 20.83 years, SD = 1.28 years) completed the Schizotypal Personality Questionnaire (SPQ), Ego Strengths Questionnaire (ESQ), a self-report version of Schizophrenia Proneness Instrument (SPI-A), and four written narratives about personal and fictional experiences. Based on the SPQ scores, participants were allocated to either control (at or below the 84th percentile on all three subscales) or study group (above the 90th percentile on at least one subscales). To obtain the linguistic dimension of the pronouns usage in the written narratives, the essays were subjected to Linguistic Inquiry and Word Count (LIWC).ResultsCompared to the control group, the high-risk group presented lower levels of ego strength, higher levels of basic symptoms, and used more personal pronouns and the they pronoun in narratives. Self-report on the SPI-A and ESQ correlated significantly with the objective lexical pattern of pronoun use: Lower ego strength correlated with greater use of they and more self-reported basic symptoms correlated with greater use of pronouns overall, personal pronouns, and the pronouns she and they. Ego strength had the most predictive power for group membershipDiscussionIn line with the hypotheses, there were significant differences between the schizotypy and the control groups in objective and subjective measures of basic sense of self. Subjective measures indicated a lower level of ego strength and higher levels of basic symptoms for the schizotypy group, as compared with the control group. Objective measures revealed a different lexical pattern with higher use of third-person and personal pronouns for the schizotypy group, as compared with the control group. Subjective (basic symptoms and ego strength) and objective measures significantly correlated with each other (pronoun use). Nevertheless, it is only the level of cognitive-perceptive disturbances that best predicted membership of the schizotypy group. Taken together, these results indicate a weak sense of basic self, namely a self-disorder, in a nonclinical population. Detection of self-disorder in the premorbid and prodrome stages of schizophrenia, paired with a suitable intervention, can help to prevent or at least minimize, the eruption of its active stage. In the future, it needs to be determined how these measures of self-disorder in non-clinical population can predict transition to schizophrenia and to other psychotic disorders. Furthermore, it would be valuable to test the distributions of measures of self-disorder in younger population from a more diverse background, such as high school students from a different socio-economic background.Lastly, it is possible to conclude that some impairment in the basic sense of self does exist in schizotypy. This is apparent across the measures of self-disorder and suggests that there is a core feature that distinguishes schizotypes from non-schizotypes.

In serious illness or disability, individuals commonly say that their sense of self has dramatically changed. One might expect that the experience of a radically altered sense of self would be even more profound in individuals after neurotrauma because it is the brain itself that suddenly, and often literally, becomes "strange." The aim of this study was to investigate how people left with autobiographical memory impairments--impairments that also affect the capacity to organize complex linguistic productions such as autobiographical narratives--experience themselves and, specifically, their sense of self. Seven adults who had primarily anterograde memory impairments for 1 year were interviewed. Regardless of the profound changes in their everyday functioning and lives, the stories the participants told evoke a surprising sense of a continuous self. Employing several narrative and discursive techniques, they emphasized sameness and an unbroken connection between their pre- and post-morbid lives. We believe that most individuals felt they did not have to recover their former sense of self because they subjectively seemed to have never lost it.

Called to Self-care, or to Efface Self?

Background and HypothesisAuditory verbal hallucinations experienced by people with schizophrenia are primarily described in terms of unusual perceptual experiences. However, they also involve profound self-disturbances. More specifically, they are deeply intertwined with disorders of the sense of bodily self. Sometimes hallucinations in schizophrenia are experienced as invading the body, whereas other times they seem to help to delineate a frontier between oneself and others.Study DesignAs one of the working groups at the 2023 biennial meeting of the International Consortium on Hallucination Research (ICHR), here we review the disorders of the sense of bodily self in schizophrenia and delineate the link between these disturbances and auditory verbal hallucinations.Study ResultsWe report findings suggesting that peripersonal space, interoception, timing, and the vestibular system may all be disturbed in schizophrenia and that there may be reciprocal influences between bodily self-disturbances and hallucinations in this condition.ConclusionsSchizophrenia is associated with multiple sensory disturbances that contribute to the sense of bodily self. How these disturbances interact remains to be explored. The relationship between weakened sense of the bodily self and hallucinations in schizophrenia is rather complex, with some evidence suggesting that hallucinations in schizophrenia may both contribute to disturbances in the sense of self and, in some cases, temporarily restore self-other boundary. Future studies are needed to establish the causal and bidirectional aspects of these relationships. We can envisage several therapeutic approaches based on the available findings, which will likely have to be adapted to the patients’ own needs.

SummaryInfant mental development occurs in interplay with a caregiver. The infant establishes an inner world, a psyche, by using his or her caregiver as transitional mental space for the development of a sense of self. This mental progress occurs simultaneously with motor elaboration, pre-conditioned by neurophysiological maturation. The bodily holding function of the caregiver, through initial skin-to-skin contact, enables the infant to develop a sense of bodily self. The pivotal role of the body as a first place of ego development is illustrated by the vignette of Nino, a 3-month-old infant whose caregiver is unable to provide the necessary physical contact, and therefore insufficiently containing the young infant. This lack of physical holding limits the infant from developing a sense of bodily self, a primary sense of self. Without the caregiver’s holding function, it is impossible for the infant to establish a relationship to a whole person.

Background: For many researchers, the focus of their work exploring the negative consequences of identifying as a gay man living with HIV has centred around stigma. Yet, over the past few years many have questioned whether the broad definition of stigma alone is able to explain the negative implications of identifying both as a sexual minority but also the impacts living with HIV. More recently, some authors have begun to question whether the emotion of shame is of more central concern. However, there has been little investigative research into shame in relation to sexuality or HIV status. Aims: Given the gaps within the literature, the study sought to explore whether shame was something experienced by gay men, and if so how they understood and experienced it in relation to both sexuality and HIV. The study also sought to investigate the impacts on both sense of self and relationships with others. Methods: Drawing on a hermeneutic phenomenological epistemology, this study adopted a qualitative, interpretative phenomenological approach to exploring the shame experiences of 10 gay men living with HIV. The men were all recruited from central London NHS HIV community services and participated in semi-structured interviews. Results: Five master themes were found across participant interviews 1) Sexuality: An Unacceptable Difference, 2) Managing an Unacceptable Self, 3) HIV: Rejection of the “Dirty” Self, 4) Negotiating a “Dirty” Identity, 5) Moving to a More Meaningful Self. Conclusion: Despite arguments of the increasing acceptance of alternative sexual identities and the normalisation of HIV, the participants in the study reported experiencing shame as a distressing, layered emotion in response to living with two highly stigmatising identities. These layered experiences of shame often resulted in a sense of the self as inferior in comparison to heteronormative ideals and a number of unwanted difficulties within interpersonal relationships. However, participants also reported their HIV diagnosis as providing some meaning but after several years of difficulty. Implications for clinical practice, policy and research are discussed.

It is argued in this paper that the disruption of one aspect of the 'sense of self' in schizophrenia, that relating to the continuity of conscious experience and the organization of action, may be linked to current models of the information-processing disturbance prominent in the disorder. The 'sense of self' in normal persons in part results from the consistent manner in which contextually appropriate stored material operates of sensory input. If, as has been proposed, there is in schizophrenia a disruption in the moment-by-moment integration of these sources of information, then a disturbance in the 'sense of self' is implicit in the cognitive model. A consideration of action identification theory (Vallacher & Wegner, 1987) permits further links to be made, since higher-level action identities are viewed as being practically synonymous with self-defining significance. It is suggested that the information-processing disturbance results in a tendency to low-level action identification and a gradually developing instability in the sense of personal identity.

Traditionally, intensive care environments can be viewed through a social interactionist lens as discrete ‘subcultural worlds’ (Fischer, 1995). Fischer (1995, p. 554) defines a subculture as, ‘…a set of people who share a defining trait, associate with one another, are members of institutions associated with their defining trait, adhere to a distinct set of values, share a set of cultural tools and take part in a common way of life’. Intensive care units can be viewed as isolated from the rest of the hospital, and practitioners who inhabit these environments adopt norms and values that are different to those adopted by those who inhabit and create the broader culture of an acute hospital. Therefore, on occasion we as critical care practitioners may be confounded by differences between the subcultural worlds of intensive care and acute wards, especially where we consider them strange or in contradiction to our own considerations and priorities. Such difference may seem exacerbated by limited contact with acute care colleagues when direct contact is only made when patients are either admitted or discharged from the unit or through outreach services. A number of recent policy initiatives have urged greater liaison and guidance to ensure more comprehensive communication of patient needs, particularly at the point of patient transfer [National Institute for Clinical Excellence (NICE), 2007, Clinical Guideline 50]. More recently, the NICE (2008) consultation document on intensive care rehabilitation raises the importance of providing specific physical and psychological support to facilitate patient recovery from an episode of critical illness. To fully understand how we might improve care for these patients, we need greater insight into the experiences of ward managers as it is they who are charged with the responsibility to transform practice and care delivery on the wards. McWhirter’s doctoral study into the contemporary role of the ward manager has illuminated some key challenges that face our colleagues. Using a grounded theory approach, she interviewed 9 ward managers (initially for 1–3 h and then with half an hour follow-up interviews on 12 occasions), 21 stakeholders (30 min to 1 h each interview) and undertook 35 h of participant observation on nine acute care wards. Data were analysed using dimensional analysis (Schatzman, 1991). Her findings concluded that without addressing the factors that impede the functioning of a ward manager to lead clinical change at ward level, the welcomed initiatives set out in the consultation document to improve patient’s rehabilitation or to improve the recognition of patient deterioration in an acute care setting, might flounder. Importantly, managers charged with the responsibility to implement any guideline need to take account of the circumstances in which ward managers’ work and their impoverished resilience to embrace yet more change. Without addressing these factors, we may not see the improvements in patient care that we all seek to achieve. The role of the contemporary ward manager is complex, diverse and dynamic. Its historical and traditional anchors have provided the role with a scaffold through which the modern methods of delivering health care in hospitals have been delivered. When ward managers describe their daily workload, they often talk about the frustrations they face, depicting feelings of helplessness and despair, particularly in meeting the expectations of hospital management. In her editorial, Scholes (2008) discusses the need for practitioners to develop resilience to rebuild and retain pride in what they do. In addition to this, there is also a need for hospital management to understand exactly why ward managers continue to work in an environment that requires them to address competing priorities, targets and uphold some apparently ‘non-sensical management systems’ (Scholes, 2008, p. 284). Operational managers need to recognize the skills and values that make up effective ward leadership, and they need to focus on rediscovering the expertize among ward managers that has been suffocated by the growing wave of administration and bureaucracy (Rankin and Campbell, 2006). The delivery of acute hospital care has changed dramatically over the past 20 years. Its focus on centralisation, standardization and targets has resulted in fast throughput and high turnover of patients (Nelson and Gordon, 2006). Individualised patient care has been replaced by systematic and process-driven pathways (Rankin and Campbell, 2006). While many have benefited from these changes, at ward level, it appears to have created an overwhelming misalignment between the values of the senior operational management within the hospital and those of the experienced ward managers. While hospitals frequently speak of their commitment to providing the highest available quality of health care, it would appear that in relentlessly busy acute wards, ward managers gave accounts of care that fell short of meeting this pledge. The promise of an NHS ‘designed around the patient’ (NHS Plan, DH, 2000) makes little connection with the experiences of ward managers who spoke of their struggle to provide sufficiently safe levels of staffing or who had little influence over timings of admission and discharge, length of stay and other issues that effected the patients’ experiences. Thus, ward managers reflected upon the frustration of attempting to deliver the objectives of their organisation while at the same time recognising that there were frequent situations when organisational constraints prevented them from doing so. Handling this dichotomous contradiction created role strain that had to be handled to continue to present themselves as ‘competent’ ward managers. The ability to create a public face for the benefit of others, which differs from the emotions that are felt inwardly, is described by both Hochschild (1983) and Fineman (1993) as ‘Emotional Management’ or ‘the management of feeling to create a publicly observable facial and bodily display’ (Hochschild, 1983, p. 7). Learning to hide ones feelings, appearing calm during times of emergency or when dealing with stressful situations is part of any nurse’s daily working life (Smith, 1992). Hochschild (1983, p. 7) describes it as ‘labour that requires one to induce or suppress feeling in order to sustain the outward countenance that produces the proper state of mind in others…’. The purpose of emotional labour is for organisations to promote a positive organisational image. Organisations ‘subvert the workers “true self” by reinterpreting the emotions they naturally feel in work situations’ (Theodosius, 2008, p. 22). Hochschild suggests that health care organisations exploit the commercial value of this principle, essentially by paying nurses to ‘care’. Undertaking emotional labour draws on the individual’s sense of self. It stems from individuality developed from memories, personal relationships and personal experiences. Hochschild (1983) argues that organisations that utilize emotional labour teach employees new ‘rules’ around feelings and emotions. Employees adopt these prescriptive emotions, which results in the suppression of their own true emotions. This ultimately serves to divide the individuals’ sense of self, creating a true self and a false self. As a consequence of this, employees can become alienated from their own sense of professional self. The emotions that are portrayed to the public and to their colleagues are determined by the organization. Using Goffman’s (1959) analysis, the ward manager developed a repertoire for ‘front-stage and back-stage’ performance. The front-stage performance was enacted to present the organisation’s expectations, but while in this role, the individual had to skilfully conceal their true feelings by adopting socially acceptable masks (Fineman 1993). As a consequence, the individual might adopt a ‘benign detachment’ (Fineman, 1993, p. 19) to disguise private thoughts that may interfere with a professional relationship. However, by sustaining such cognitive dissonance, the individual was at risk of burn out, disengagement and alienation (Hochschild, 1983). An organisation that fails to recognise these traits and does not address them will inevitably result in a disaffected and isolated workforce. The ward managers in McWhirter’s study recognised their role in motivating and supporting their ‘battle weary’ workforce (Norris, 2000) by understanding the emotions of their ward teams. They recognised the challenge of delivering care to complex and dependent patients when their clinical teams may be subject to staff shortage and/or dependence on temporary staff. The ward manager’s front-stage performance was demonstrated by working long hours to ensure their presence in the ward, often juggling office-based duties with clinical responsibilities and positively promoting the messages sent out by the hospital management to the wards. Back stage however, their professional values were often at odds with the realities of delivering fast patient throughput and standardisation. Being present on the ward might be seen as anchoring themselves to a traditional view of the ward sister as leaders of care provision (Fretwell, 1982; Ogier, 1982), despite an organisational imperative to shift the role to a more managerial activity (DH, 2000). The ward manager’s reluctance to move away from a clinical role was highly evident. Although ward managers acknowledged that dealing with organisational priorities to achieve financial stability and manage complex staffing and human resources issues have gained greater importance within their working day, they expressed frustration and distress at the diminished time that could be spent in clinical contact with patients. To compensate for this loss and ensure the patients received good care, it has become ‘normal’ for ward managers to work an extended day, often spending the evening hours back on the wards, with their patients and relatives. The ambivalence surrounding the role is exacerbated by the patients’ unchanged perception that the ward manager should be working as the clinical expert and leading their team from the front. Medical teams expect ward managers to have an in-depth knowledge of all patients on their ward and assume that they are available to undertake ward rounds. Managers, while demanding data, reports and accountability for budget statements and levels of staffing, expect that the ward managers will teach students, support struggling staff and care for critically ill patients and their families. They also expect them to adopt the latest initiative in quality service improvement without necessarily removing other responsibilities to facilitate this. The inevitable consequences of working long hours, under pressure, has resulted in an exhausted and battle weary role. This weak and fractured tier of the workforce has become too tired to challenge or question their situation. They demonstrate the behaviour of passive compliance in a cycle where they continue to take on new responsibilities and achieve this by working harder and for longer. They put up with these demands for the sake of their patients and are rewarded by the infrequent pockets of time when they were able to offer and deliver emotional work: their motivation to continue to come back into work. However, this has left them professionally compromised, demoralised and exhausted, all characteristics of varying degrees of burn-out (Skovholt, 2001). Traditionally seen as healers and carers, it appears that ward managers have become wounded storytellers (Frank, 2004). As the custodian of emotional management, the hospital culture has the ability to manipulate this. Yet, its command and controlling style of management has failed to understand the significance of emotional labour and convert this knowledge into achieving higher levels of patient safety and patient satisfaction, both issues featuring highly on the NHS agenda (Darzi, 2008). There is a wealth of evidence from the USA and Canada to suggest that levels of patient safety are much higher when nurses are valued Rankin and Campbell, 2006), and yet, it appears that in the UK, we have been unable to capture the true essence of the nursing identity and translate this into supporting a workforce that is able to combine both the academic and the emotional aspects of care that are required to deliver modern health care safely. There is no doubt that our hospital wards need competent and creative leaders, but as our health service has modernised and transformed it has delegated the responsibilities of managing ward finance, data reporting and staffing to the ward manager. Ward managers have always been a pivotal role of the National Health Service. They have a responsibility to guide and support their staff to move forward, embrace new ways of working and service improvements. Yet, they have been a neglected tier of the nursing workforce. Their role has changed dramatically, leaving them undervalued, exhausted and consequently questioning not only their sense of purpose but also their whole essence of their professional identity. It is clear that there are ward managers who are prepared to work extraordinarily hard to maintain high standards of care, despite the systems and processes in place that suppress their ability to provide emotional work. They are willing to find moments in their chaotic working day that allow them time to provide the care for their patients that they believe makes a difference. The NHS is in serious danger of losing these experienced skilful role models if we do not recognise the real, yet suppressed, identity of ward managers and understand the values and ideals that motivate them to care. Only by understanding this can we begin to place a value upon the emotional labour that they and their teams provide. It is timely to now revisit what unites us to our ward-based colleagues rather than emphasising the differences in our clinical worlds. By building on that, we will be better able to bring about the change required to embed new service initiatives to enhance care for the acutely sick and patients rehabilitating from critical illness. New systems, structures and supplementary roles may do no more than hinder the ambition to achieve such an outcome. Rather, reinvesting in the ward manager and restoring their rightful place as clinical leaders of ward teams may yield a better outcome for our colleagues, their patients and relatives.

Alterations in the sense of self caused by direct electrical stimulation of the human precuneus

The critic Anthony Caputi identifies in John Marston's work an internal consistency that derives from his attention to and satiricomic expression (vii). This thesis argues that Marston's satire is informed by the strategic use of metatheatrical technique in his drama, and that this technique is prevalent regardless of genre. The function of this self-reflexive device is to continually foreground subversive interrogations of prevailing Jacobean socio-cultural practice, in the form of what may be termed dangerous dialogues. In each of the plays examined, Marston's characters attempt to exert control over language and other characters with self-conscious and extravagant role-playing. In defining and enacting a role for themselves, they aim to achieve an autonomous sense of self, and then to subordinate others within a 'plot', or worldview, with this reflexively acted and fashioned self at the centre. However, the intense doubleness of action and language that Marston archly exploits in order to promote social satire in his plays always militates against these attempts to unequivocally assert such power.Three of Marston's plays are analysed in order to demonstrate how he creates dangerous dialogues that critique social and cultural hegemonic ideologies. In the revenge tragedy Antonio's Revenge, it is seen how attempts by court figures such as Piero and Antonio to control and manipulate other characters with language and performance are attempts to assert a centred sense of self, and ultimately, reinforce what they see as social order. Throughout this play, the act of theatricality itself, the very technique employed by these characters to achieve power, in fact subversively reveals the artifice of socio-cultural conventions such as law and order, state power, and the divine right of rulers, questioning their status as self-evident social truths. Marston shows how it is impossible for any character to discipline the centrifugal force of language, containing as it inevitably does the voice of an oppositional other. It is the implicit awareness of this fact that forces the revengers in this play to resort to extreme violence and paradoxically destabilise social order in their attempt to affirm it.The second play examined, The Malcontent, uses the tragicomedy form to interrogate more closely the concept of authority, in particular the ducal authority sought by the figures of Altofronto/Malevole and Mendoza. In endeavouring to reclaim his role as Duke of Genoa, the usurped duke Altofronto adopts the role of the malcontent Malevole in order to attain his political ambition. However, his disguise calls for the voicing of dialogues that intensely condemn the role of Duke and the social hierarchy he presides over as artificial and randomly contrived. It is seen how these dialogues are not completely silenced by the play's attempt at closure. The central figure of the drama is an embodiment of the double-edged nature of language and performance that Marston explores in his plays; the voicing and enacting of one version of social convention necessarily and inevitably brings into being an alternative version. The two co-exist in an unresolvable dialogue that showcases the struggle of contending ideologies.In The Dutch Courtesan, Marston foregrounds the roles of women, and demonstrates how their dialogues continually unsettle the male characters' assertions of social power. Beatrice, Crispinella and Franceschina replicate females such as Maria, Mellida and Macquerelle who feature in the two earlier plays, but the women's voices are arguably given more space in The Dutch Courtesan. In focusing on gender as the battleground upon which the males attempt to assert their sense of autonomous masculine selves, Marston shows how the role-playing of the major male characters in fact potentially reveals how gender itself is an artificial construction. Figures such as the prostitute Franceschina and the maid Beatrice actually have the power to feminise the male characters. As Freevill and Cocledemoy combat these dangerous female dialogues by employing role-playing, their attempts to totally exclude female voices from their sense of selves merely work to reinforce their very presence. Their acts of role-playing are effectively acts of prostitution, implicating them in a performative trap with the anarchic doubleness of language at its base.This thesis aims to show that a sense of subversion results from Marston's strategy of displaying characters' self-reflexive role-playing. Used as means to assert an autonomous self and, finally, the hegemonic constructions of social order, Marston instead highlights the disorder that lurks just beneath the surface of these artificial constructions, and perpetually threatens to disrupt them. This disorder is the essential quality of language itself, this doubleness that continually challenges Jacobean socio-cultural orthodoxy. Instead of order, Marston posits anarchy as the natural condition of existence leading to oblivion; the fact that he dedicates his Scourge of Villaine To euerlasting Obliuion and that his epitaph reads 'OBLIVIONI SACRUM' perhaps reinforces that this was indeed a prominent theme of his life and work.

Westerners tend to localize their sense of self in the head, and, to a lesser degree, in the chest. However, single-point, localization studies of the self omit direct exploration of the size and shape of the embodied self. This study explored a) beliefs about the location and spatial distribution of the embodied sense of self, and b) whether individual differences in how the embodied self was represented were associated with psychological and subjective well-being. Results from a sample of 206 American adults confirm extant reports, indicating that the embodied sense of self is most often located in the head and chest. However, results from this study extend previous findings by suggesting that the majority of respondents (70%) located their embodied sense of self in multiple body regions, and individuals that reported a more widely distributed sense of self reported greater well-being. Specifically, a more widely distributed sense of self in the torso was most strongly associated with psychological well-being. No relationship emerged between the distribution of the sense of self in the head and psychological well-being. Results from this study indicate that the sense of self may be located throughout the body, and that locating the sense of self in the torso may have psychological benefit. As such, exploring methods of shifting the sense of self out of the head and into the body may have therapeutic value.

Family stigma is associated with persistent negative outcomes among adult children of parents with mental illness (ACOPMI). Loss of sense of self has been reported by ACOPMI; however, the role of family stigma on sense of self remains unclear. Additionally, research suggests coping behaviour (i.e. adaptive or maladaptive) influences the effect of stigmatization on sense of self. This study investigated the impact of family stigma and coping on sense of self among ACOPMI (N = 134, 63.4% female). As hypothesized, high family stigma was associated with weak sense of self (p < 0.001), and ACOPMI who endorsed adaptive coping demonstrated higher sense of self than those who coped maladaptively (p < 0.001). Further, coping moderated the relationship between family stigma and sense of self (p < 0.001). Unexpectedly, this relationship was only significant for ACOPMI with adaptive coping skills (p < 0.001). At higher levels of stigmatization, post hoc analysis revealed coping styles did not exert an influence on sense of self. Results suggest family stigma contributes to loss of sense of self among ACOPMI, with adaptive coping being protective only at lower levels of family stigma. Findings highlight the need for a systemic approach to eradicate family stigma.

Through the experiences of five people, this study asks how support systems develop, are used and are valued for those faced with the everyday challenges of living with HIV. Additional evidence is found in accounts from those identified as essential sources of support. These are primarily friends, sometimes family. This perspective is rounded out by insights gathered from those working in local organisations and in the analysis of services offered by the state. The three women and two men at the centre of this study live in Makhanda in the Eastern Cape, South Africa. Makhanda (formerly Grahamstown) is characterised by extremes of poverty and wealth, reflected in low employment, expanding informal and low-income settlement areas but also in a high level of community activism and access to resources. Each of the five tested positive for HIV variously between 1998 and 2008. These years were pivotal in the development of the local and national epidemic. The rapid expansion of infection rates, contestation over forms of and access to treatment, followed by emphasis of a biomedical response, in equal measure bracket and cut across their experiences. To this point, research is less concerned with what individual experiences say about living through the HIV/AIDS epidemic. Preoccupations lie more generally with macro- or micro-level factors, with behaviour change, managing risk and so public health – not the processes linking individual circumstances and choices to opportunities and outcomes described by individual, community and structural, socio-economic contexts. Personal accounts and observations of a developing, community-based, local response to an unfolding epidemic are therefore considered against the analysis of available medical and nonmedical resources. This enables identification and investigation of social processes operating between proximal and distal conditions, determining possibilities for access to support. The focus of this study thus falls to the interrelations of structure, agency and action. It contributes to an empirical and theoretical understanding of what “support” is, what “coping” means and what unfolds where diagnosis with HIV disrupts and challenges existing ways of coping and forms of support. The accounts gathered for this study offer an “insider” perspective, focused on what follows from testing positive to identifying what resources hold significance. Connections between individual, community and society, through psycho-social, local and macro-level processes are explored. Along with the empirical study of individual accounts, the thesis offers a theoretical framework that uses a grounded-theory approach in conjunction with the tools of narrative analysis. These are critically adapted from a sociology of illness studies. Ideas of risk and response, of material and social capital, of the nature of HIV/AIDS as an experience that is inclusive of both chronic, everyday challenge and critical, life-threatening crisis disrupting a sense of time, biography and self, are brought together in the analysis. In this way the understanding of what support means, how it develops and is used (systematically or not), and of the links operating between structural and social conditions, individual agency and action, can be developed. What the thesis finds is that, beyond the medical system of hospitals and clinics, there is surprisingly little use of available resources. There is thus an absence of any systematic support for those faced with the physical, psychological, social and material impacts of HIV/AIDS. Given the nature of personal circumstances, embedded as they are within local conditions that reflect structural constraints of the broader economy and society, this should not be surprising. A system of support exists in only the most limited definition. Against this, what is novel in these findings is the role that psycho-social processes play in negotiating these conditions and how this works, determining what unfolds. A key finding is that it is more through chance than choice that people do find conventional forms of support. The reasons for this have to do not only with limitations to state and institutional capacity, but also with the impact on individuals of perceptions of themselves shaped by the impact of the epidemic and also the past. The result is that under the burden of HIV/AIDS, in the context of extreme inequalities and the absence of an adequate response from the state, already invisible individuals who do not “count” run the risk of becoming doubly invisible. It is through a process of personal adaptation in which shifts in identity and a sense of self are key that they must find their own way. This involves re-conceptualisations of identity, a sense of self and place in the world. The focus on five people and the community in which they live is a limit to the scope of study Yet it is this focus which allows for a new understanding of the social processes involved, and so the links operating between individuals and society. This is of significance beyond the study of HIV/AIDS alone, contributing to the broader sociological project of understanding what it means to “be human”.