Living with Hereditary Haemorrhagic Telangiectasia: stigma,coping with unpredictable symptoms,and self-advocacy

Abstract

Objective: Hereditary Haemorrhagic Telangiectasia (HHT) is a genetic condition causing frequent nose bleeds, skin lesions (telangiectasia) and arteriovenous malformations. Approximately, 50% of people experience life-threatening HHT symptoms including haemorrhages in the brain, lungs and liver. This study aimed to gain a qualitative understanding of the psychosocial impact of HHT over time. Design: Using a phenomenological framework, a rigorous narrative analysis was performed on 20 semi-structured interviews with individuals with HHT aged 20s–60s. Main outcome measures: Qualitative themes explaining life experiences prior to and following a clinical diagnosis of HHT. Results: Narratives highlighted four psychosocial themes: (i) the psychological impact of visible symptoms was significant and related to experiences of social stigma, (ii) individuals struggled to identify triggers of symptoms in order to reduce unpredictability, (iii) an illness identity was rejected by minimising HHT when talking about the present self, and by positive reframing as ‘lucky’ and (iv) self-advocacy was necessitated due to lack of expert coordinated care. Conclusion: HHT has a demanding impact on social, physical and psychological well-being. These findings have significant implications for health care, as narratives about interactions with health professionals often used the terms ‘frustrating’ and ‘not being heard’.     

Efficacy of a Post-modern Group Career Assessment Intervention of Disadvantaged High School Learners

The study used a post-modern group assessment procedure to explore career perceptions of 11 Grade 11 learners (6= males; 5= females; mean age = 17 years) from disadvantaged communities. A qualitative process of thematic content analysis was used to analyse the data. The results suggest that narrative career assessment in a group setting may provide a viable alternative to career counselling and assessment with disadvantaged learners.     

A Group of Black South Africans' Experience of Telling their Untold Stories about the Apartheid Era

The aim of this research was to explore a group of black South Africans' experiences of telling their untold stories of survival about the apartheid era. The expectation was that if they did become more aware of these alternative stories, it could have a far-reaching effect on their lives. A qualitative study was conducted with a group of seven black South African survivors of the apartheid era, ranging in age from 42–62 years (males =5, females =2). These participants formed part of an earlier study investigating their perceptions regarding factors that helped them to survive the apartheid era. For the present study, unstructured interviews were conducted focusing on their subjective experiences after the initial study. Analysis of the data yielded seven prevalent themes, namely a positive experience that made a difference, gaining of a positive attitude, not all white people are bad, transgressing the past and moving on, awareness of personal strengths, forgiveness and starting to talk to family and friends. The participants became aware of their untold stories of survival and experienced a positive change within themselves, towards others, the past and the future.     

Community as Outsider Witness: Utilising Community Members in the Reconstitution of Problem-Saturated Identities

This study explored community members' ability to enlist discourses affirming of psychiatric patients' quest for generative identities. The participants were members of the public who attended an exhibition of psychiatric patients' artwork (n = 7, age range 18–55). A Foucauldian discourse analysis was used to analyse the research interviews. Results revealed that the majority of community members used dominant cultural discourses to speak about psychiatric patient-artists. These discourses conferred a problem-saturated identity on to psychiatric patients. We conclude that community members can be recruited as outsider witnesses to support psychiatric patients' search for generative identities, provided community members resist discourses that produce problem-saturated identity conclusions.     

Reconsidering religion and fandom: Christian fan works in My Little Pony fandom

Studies of religion and fandom have tended to explore the extent to which fan cultures might be seen as forms of surrogate religion. This article suggests that a more detailed examination of the way in which believers use their faith within their individual fandoms would offer more interesting insights into both contemporary religious practice and fandom. Conducting a case study of ‘Brony’ fandom (adult fandom of cartoon My Little Pony: Friendship is Magic), this article explores the ways in which Christian fans use fan fiction and art to promote religious literacy, explore theological issues and engage in evangelism and exegesis. Fan knowledge is used as a way to quickly impart and explore complex religious concepts in a manner which utilises the shared culture of fandom. This should not be seen as a symptom of ‘mediatisation’ but as part of a complex synthesis of faith and popular culture.     

Using Stories in Dynamically Oriented Clinical Social Work

Abstract

This paper uses concepts from discourse analysis to understand the meaning making functions of narrative in clinical treatment and to describe the interactive processes through which these functions are achieved. “Negotiative” and “heuristic” narrative processes are described as they occur in ordinary conversation. The relevance of these concepts to clinical practice is then explored using case material.     

‘Wholeness,Dignity and the Ageing Self’: A Conversation Between Philosophy and Theology

SUMMARY

Winifred Wing Han Lamb: My philosophical interest straddles the areas of education, religion and theology. As a teacher involved in school philosophy programs, I have also been interested in the philosophy of childhood and particularly in the recurring notion of the ‘whole child’ in education. In considering what ‘wholeness’ could mean for children's education, I have also been led to consider what meaning it holds for the self through the ‘changing scenes’ of life, especially in the face of the challenges of ageing.

The notion of ‘wholeness’ holds an intuitive appeal and invites articulation of the deep truths of our faith with respect to persons in all ‘sorts and conditions.’ In section one of this chapter, I attempt that articulation. But this conversation needs to be complementary. Our chapter is the beginning of a dialogue between philosophy and theology in which both affirm the ageing self in the light of the human search for wholeness and dignity.

Heather Thomson: My theological research into humanity as an image of God led me to inquire about the way in which we could speak meaningfully of ageing and dying in terms of imaging God. This challenged how God-likeness was to be understood in relation to glory, honour and power, terms associated with imaging God and exerting dominion. In searching for a theological view of the self that would confer dignity on the ageing, I was led into conversation with various philosophies of the self, some very helpful for my task.

It seems to me that, if ageing people are to be counted as having dignity and worth, and not discounted, then one's theory of the human person was significant. In pondering the issue, it appeared that a conversation between philosophy and theology would be fruitful. Hence, this joint paper. We each speak from our own discipline but find resonance with each other's work. We see this as a first step in a constructive conversation.     

Constructing and deconstructing psychotherapeutic discourse

This paper reviews recent work on the social construction of the self in counselling and psychotherapy, and argues that we need to attend to the ways in which the therapeutic self is fashioned (a) in relation to the ‘psy-complex' as the network of theories and practices concerned with psychological governance and self-reflection in modern Western culture and (b) in the context of ‘therapeutic domains' outside the clinic and academe, domains of discursive regulation and self-expression which then bear upon the activities of professional and lay counsellors. Therapeutic domains contain repertoires, templates and complexes within which counsellors and clients fabricate varieties of truth and story a core of experience into being. I then turn to describe and assess some of the various ways in which this kind of critical reflection on therapeutic discourse and counselling practice now already underpins the work of social constructionist ‘narrative' therapists. Some attention is given to the different pragmatic and deconstructionist approaches which make the discursive constitution of the problem into the problem, either by dissolving or by externalizing the account the client presents. Here I argue that the activities of social constructionist counsellors can be viewed as forms of deconstruction-in-process (a deconstruction of the discursive frames which have been constructed by the client), but that they should not be viewed as stepping outside the discursive conditions of possibility which ground their work. the psy-complex and therapeutic domains still function as relatively enduring structures which limit the degree to which we may construct and deconstruct psychotherapeutic discourse.     

SOME IMPLICATIONS OF BION'S THOUGHT

Following up Bion's idea that dreaming is a continuous process that takes place in waking life as well as in sleep, the author develops its theoretical and technical implications. He describes the narrative derivatives of waking dream thought as the means, or interface, whereby access may be had, albeit indirectly, to the constantly forming sequences of alpha-elements. Examples of the formation of these sequences out of childhood memories, present-day experiences and sexual feelings are given. Reference is also made to the notion of the analytic field. The author goes on to demonstrate the clinical value of these concepts both for studying the session's microtransformations and as a means of in-depth examination of the analyst's own mental functioning, including its lapses, in a session. Abundant clinical material is presented to help analysts who normally apply different models of the mind share these ideas. Finally, it is suggested that night dreams result from a further elaboration of the elements formed during waking life.