A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Psychotherapeutic work with Families with Life-threatening Maternal Illness

This exploratory research study describes a child and adolescent psychotherapeutic clinical service offered to children/adolescents and their families with mothers with a life-threatening illness. The clinical service itself was also exploratory in nature. The research objectives of the study were (i) to explore whether this form of clinical work could be beneficial for such families in relieving distress and supporting their development; (ii) to discover the factors at play within and between the family members using an adaptation of Grounded Theory research methodology; and (iii) to add to the knowledge base for adults – family members and professionals – relating to, and dealing with, such children and adolescents. Descriptions and discussion of the therapeutic input and research study are given. Symptoms, which included emotional, behavioural, psychological, learning, and interpersonal difficulties, decreased in all the children/adolescents who were offered clinical treatment within an outpatient multidisciplinary Tier 3 Child and Adolescent Service (CAMHS). Six Themes were identified across the cases and these were named: Engagement, Parental Concern, Impact of Mother’s Illness, Defences, Sustaining Factors and Feeling Different. These Themes are discussed in the light of relevant published research. A literature review was undertaken and focuses on: epidemiological context; children’s understanding of death; impact of parental bereavement in childhood; the mourning process; anticipatory grief; psychoanalysis: mourning and trauma; children’s play and drawings as communication; and psychosocial therapeutic services. The thesis has particular relevance for child and adolescent psychotherapists and other mental health professionals who work within hospital and hospice settings.

Psychotherapeutic work with Families with Life-threatening Maternal Illness

This exploratory research study describes a child and adolescent psychotherapeutic clinical service offered to children/adolescents and their families with mothers with a life-threatening illness. The clinical service itself was also exploratory in nature. The research objectives of the study were (i) to explore whether this form of clinical work could be beneficial for such families in relieving distress and supporting their development; (ii) to discover the factors at play within and between the family members using an adaptation of Grounded Theory research methodology; and (iii) to add to the knowledge base for adults – family members and professionals – relating to, and dealing with, such children and adolescents. Descriptions and discussion of the therapeutic input and research study are given. Symptoms, which included emotional, behavioural, psychological, learning, and interpersonal difficulties, decreased in all the children/adolescents who were offered clinical treatment within an outpatient multidisciplinary Tier 3 Child and Adolescent Service (CAMHS). Six Themes were identified across the cases and these were named: Engagement, Parental Concern, Impact of Mother’s Illness, Defences, Sustaining Factors and Feeling Different. These Themes are discussed in the light of relevant published research. A literature review was undertaken and focuses on: epidemiological context; children’s understanding of death; impact of parental bereavement in childhood; the mourning process; anticipatory grief; psychoanalysis: mourning and trauma; children’s play and drawings as communication; and psychosocial therapeutic services. The thesis has particular relevance for child and adolescent psychotherapists and other mental health professionals who work within hospital and hospice settings.

Sorg och sorgebearbetning hos anhöriga vid väntade och plötsliga dödsfall - En litteraturstudie

Introduktion: När en närstående dör, oavsett om det är väntat eller sker plötsligt, drabbas anhöriga av sorg. Sorg innefattar fysiska, känslomässiga, kognitiva, andliga och sociala utmaningar. För att kunna hantera dessa utmaningar är det viktigt att bearbeta sorgen.  Syfte: Att belysa sorgereaktioner samt förhållanden som påverkar sorgebearbetningen hos anhöriga vid väntade och plötsliga dödsfall. Metod: Studiens datainsamlingsmetod är en litteraturstudie vars resultat bygger på redan befintlig vetenskaplig litteratur. Sökningarna genomfördes i databaserna CINAHL och PubMed och resulterade i 12 artiklar. Artiklarnas resultat lästes noggrant igenom, enskilt och tillsammans.  Resultat som svarade på syftet bearbetades och delades in i två sektioner med tillhörande teman. Resultat: Litteraturstudiens resultat visar att anhöriga upplever många olika sorgereaktioner när en närstående dör. Reaktionernas intensitet varierar beroende på hur den närstående dör samt den närståendes och anhörigas relation samt ålder och den anhörigas kön. Hur sorgebearbetningen utvecklas beror på olika förhållanden: närstående och anhörigas inställning kring döden, den döendes lidande samt olika former av stöd. Slutsats: Sjuksköterskor är ofta de som först möter anhöriga efter en närståendes död. Det är därför viktigt att sjuksköterskor har kunskap om sorg för att kunna bemöta och ge god omvårdnad till dessa anhöriga samt underlätta den kommande sorgebearbetningen. 

O processo de luto em pessoas idosas defilhadas e a CIF: um estudo exploratório

Introdução: O luto provocado pela morte dos filhos, o defilhar, desperta fortes sentimentos de raiva, culpa e de censura, sendo estas mortes vividas como uma falha na capacidade de dar e proteger a vida. Superar uma perda desta magnitude implica reestruturar psicologicamente e socialmente. Ainda são muito poucos os estudos realizados para identificar e caraterizar estratégias de superação do luto e menos ainda quando dizem respeito ao defilhar. Objetivos: O objetivo deste estudo é analisar numa amostra de mulheres que perderam um filho (defilhadas) com idade igual ou superior a 60 anos, as narrativas de superação do seu processo de luto e mapeá-las à Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). Métodos: Foi elaborado um protocolo com os seguintes instrumentos: Short Portable Mental Status Questionnaire (SPMSQ), informações sociodemográficas (idade, género, estado civil, nível educacional, localização geográfica, quantos filhos tem, quando faleceu o filho(a), se foi morte súbita ou esperada, se toma medicação antidepressiva, soníferos ou ansiolíticos e se sim, há quanto tempo), Inventário de Luto Complicado (ILC) e uma entrevista semiestruturada. O protocolo foi administrado a uma amostra de 8 mulheres. Resultados: Os resultados globais sugerem que apesar de grande parte do processo de superação do luto ser bastante emocional, foi possível classificá-lo utilizando o referencial CIF. Dentro do componente ’Funções do Corpo‘, verificou-se o predomínio das funções emocionais nas categorias ‘o que mudou na sua vida’, ‘superação da dor’ e ‘estratégias adotadas’; no componente ‘Atividades e Participação’ destacaram-se aquelas associadas à religião e espiritualidade, nas categorias ‘superação do luto’, ‘estratégias adotadas’ e ‘o que mais gosta de fazer’; no componente ’Fatores Ambientais‘ (‘apoio e relacionamentos’) sobressaiu o apoio proporcionado pela família próxima nas categorias ‘superação da dor’, ‘estratégias adotadas’, apoios físicos ou humanos recebidos’ e ‘o que mais gosta de fazer’. Conclusão: Foi possível mapear à CIF o processo de superação do luto por defilhadas idosas. No entanto, para se obterem dados mais conclusivos, são necessários mais estudos em amostras com maiores dimensões, que abranjam ambos os géneros e com faixas etárias mais amplas. Também é necessário adaptar o protocolo ao referencial CIF de forma a obterem resultados mais precisos.

The Gospel of Something or Other / Critical mass

This thesis is comprised of two components: a creative work of fiction and a critical analysis of the fiction through a discussion of craft and creative influence. The creative section, the novel The Gospel of Something or Other, is a formally experimental work that explores authenticity - of both narrative and voice - authorial identity, the performativity of grief and sincerity, and the aesthetic function of narratalogical failure. The critical section of the thesis, Critical Mass, analyses the work of David Foster Wallace and James Wood in relation to the aforementioned fiction, discussing aspects of craft most relevant to the novel: the function of comedy and the function of manipulation. The critical piece investigates the extent to which influence can be identified in the creative process and the unstable relationship between critical interpretation and authorial intent.

Exploring the Process of Meaning-making after Partner Suicide

Meaning-making is increasingly recognized as a fundamental aspect of the grief experience. This study investigated the process of meaning-making in the narratives of individuals whose partners died by suicide, exploring their meaning reconstruction in response to this form of loss. The narratives of users of a public online grief support forum (n = 50) were analyzed using the Meaning of Loss Codebook (Gillies, Neimeyer, & Milman, 2014), which consists of core categories of meaning of loss in response to the death of a loved one. The results indicated that these individuals predominantly experienced negative affect, a lack of understanding associated with the loss, and a longing for their partners. The grief experience of participants in this study was marked by substantial psychological distress and an ongoing struggle to make sense of and find meaning in this type of loss. It is clear that grieving the loss of a partner as a result of suicide presents unique challenges to meaning-making in comparison to other types of loss. Given the importance of this aspect of adjustment to loss, these findings deepen the understanding of this component of grief and inform the provision of support for those grieving a loved one who died by suicide.

White Moths

This collection navigates the process of grief after the speaker’s loss of both parents. The speaker struggles to connect with both the dead and the living through her physical intimacy and relationship with a troubled lover. These poems explore and exhume the speaker’s buried memories, moving from moments of wry humor to meaningful and sometimes painful discovery. Ultimately, these poems attempt to reach beyond the self, to transform loss and loneliness from a human condition into a musical tool of art for human connection.

Wegbegleitung, Trost und Hoffnung. Interdisziplinäre Beiträge zum Umgang mit Sterben, Tod und Trauer

Sterben und Tod bedeuten meist das Hindurchgehen durch eine schwere Zeit sowohl für den Betroffenen selbst als auch für dessen Familienangehörige und Freunde. Umso wichtiger ist es, diesen Weg nicht alleine gehen zu müssen und dadurch Trost zu finden, dass in der Begleitung eine lebensstärkende Hoffnung zum Ausdruck kommt. Der vorliegende Band zum Thema Sterben, Tod und Trauer versammelt Beiträge aus unterschiedlichen fachlichen und beruflichen Perspektiven. Dabei wird die Soziale Arbeit als Bindeglied zwischen den unterschiedlichen Disziplinen herausgearbeitet. Das Buch macht deutlich, das Sterben und Trauern nicht nur mit großen Belastungen verbunden sind, sondern auch Chancen zu Integrität, Erkenntnis und persönlichem Wachstum eröffnen. Eine ganzheitliche, an den Bedürfnissen der Betroffenen orientierte Wegbegleitung von Haupt- und Ehrenamtlichen kann hierbei eine wichtige Hilfe darstellen. (DIPF/Orig.)

The Ultimate Secrecy: Feminist Readings of Masculine Trauma in Vietnam War Literature

It is a widely acknowledged and often unquestioned fact that patriarchy and its modes of behaviour and social organization favour the appearance of trauma on the weakest (and defenceless) members of society: women. In the last decades, trauma seems to have taken the baton of typically female maladies such as 19th c. hysteria or 20th c. madness. Feminists in the 20th c. have long worked to prove the connection between the latter affections (and their reflection in literary texts) and patriarchal oppression or expectations of feminine behaviour and accordance to roles and rules. With Trauma Studies on the rise, the approach to the idea of the untold as related to femininity is manifold: on the one hand, is not trauma, which precludes telling about one’s own experience and keeps it locked not only from the others, but also from ourselves, the ultimate secrecy? On the other hand, when analyzing works that reflect trauma, one is astounded by the high number of them with a female protagonist and an almost all-female cast: in this sense, a ‘feminist’ reading is almost compulsory, in the sense that it is usually the author’s assumption that patriarchal systems of exploitation and expectations favour traumatic events and their outcome (silence and secrets) on the powerless, usually women. Often, traumatic texts combine feminism with other analytical discourses (one of the topics proposed for this panel): Toni Morrison’s study of traumatic responses in The Bluest Eye and Beloved cannot be untangled from her critique of slavery; just as much of Chicana feminism and its representations of rape and abuse (two main agents of trauma) analyze the nexus of patriarchy, new forms of post-colonialism, and the dynamics of power and powerlessness in ethnic contexts. Within this tradition that establishes the secrecies of trauma as an almost exclusively feminine characteristic, one is however faced with texts which have traumatized males as protagonists: curiously enough, most of these characters have suffered trauma through a typically masculine experience: that of war and its aftermath. By analyzing novels dealing with war veterans from Vietnam or the Second World War, the astounding findings are the frequent mixture of masculine or even ‘macho’ values and the denial of any kind of ‘feminine’ characteristics, combined with a very strict set of rules of power and hierarchy that clearly establish who is empowered and who is powerless. It is our argument that this replication of patriarchal modes of domination, which place the lowest ranks of the army in a ‘feminine’ situation, blended with the compulsory ‘macho’ stance soldiers are forced to adopt as army men (as seen, for example, in Philip Caputo’s Indian Country, Larry Heinemann’s Paco’s Story or Ed Dodge’s DAU: A Novel of Vietnam) furthers the onset and seriousness of ulterior trauma. In this sense, we can also analyze this kind of writing from a ‘feminist’ point of view, since the dynamics of über-patriarchal power established at the front at war-time deny any display of elements traditionally viewed as ‘feminine’ (such as grief, guilt or emotions) in soldiers. If trauma is the result of a game of patriarchal empowerment, how can feminist works, not only theoretical, but also fictional, overthrow it? Are ‘feminine’ characteristics necessary to escape trauma, even in male victims? How can feminist readings of trauma enhance our understanding of its dynamics and help produce new modes of interaction that transcend power and gender division as the basis for the organization of society?

Personal notions of time travel: reflections on love, loss, and growth through autoethnography

Using the concept of time travel as a contextual and narrative tool, the author explores themes of love, loss and growth after trauma. Reflections relate primarily to the experience of conducting the qualitative research method of autoethnography. Opening with consideration of existing work (Yoga and Loss: An Autoethnographical Exploration of Grief, Mind, and Body), discussion moves on to academic thought on mental time travel, and personal transformation, culminating in the construction of a new memory combining past, present, and future.

Ideación suicida y desesperanza en pacientes con cáncer

El objetivo de la presente investigación fue identificar la relación entre ideación suicida y desesperanza en 160 pacientes con cáncer. La ideación suicida se midió a través de dos ítems de una entrevista semiestructurada, la escala de ideación suicida (ISS), el ítem 9 del inventario de depresión de Beck (BDI-IA). La desesperanza se midió con la escala de desesperanza de Beck (BHS). Los resultados obtenidos indicaron una relación significativa (p=.000) entre ideación suicida y desesperanza; una prevalencia de ideación suicida en los pacientes con cáncer entre 4.4% y 13.8% y de riesgo de suicidio entre 5.6% y 30.6%; y algún grado de desesperanza en 31.9 % de los participantes. De acuerdo con lo anterior, se confirma que existe relación entre la desesperanza y la ideación suicida en pacientes oncológicos adultos. Adicionalmente, que estas variables están presentes en los pacientes y que ameritan atención en la intervención interdisciplinaria.

Resiliencia y desempeño organizacional

El cambio hoy se reconoce como el principal reto que enfrentan las empresas. Desde diversas ciencias como la biología, la psicología y la dirección se vienen estudiando las diferentes variables que tienen relación con los procesos de ajuste y adaptación que los individuos y las organizaciones desarrollan cuando disrupciones de diverso tipo se materializan en el entorno. En las últimas décadas se ha contemplado el estudio de la resiliencia como una característica que pueden desarrollar las organizaciones. Por ello, es un tema de estudio interesante, tanto desde los individuos como desde las organizaciones. Se revisan en este artículo los conceptos de resiliencia, resiliencia individual y organizacional, así como las relaciones que surgen entre dichos conceptos para explicar el desempeño organizacional.

El concepto de duelo en los familiares de los desaparecidos : una revisión de la literatura

Este trabajo de grado tiene por objetivo realizar una revisión de literatura que dé cuenta de las características conceptuales del duelo que viven los familiares de los desaparecidos, en un contexto de desaparición forzada de personas como ilícito internacional de los derechos humanos. Para ello se exploraron libros de consulta reconocidos en el tema, artículos de revistas indexadas de los últimos diez años, y jurisprudencia de la Corte Interamericana de Derechos Humanos de casos de desapariciones forzada. Se presenta la definición de la desaparición forzada como ilícito internacional en DDHH, una categorización de víctimas, el desarrollo del concepto de duelo general y para estos casos y su aplicabilidad a los casos de la Corte IDH. Se encontró que los hallazgos dados por la teoría son aplicados en los dictámenes de esta corte, con un discurso de reivindicación de derechos y reparación integral. Se recomiendan futuras investigaciones en propuestas terapéuticas.

El arte como proceso de subjetivación del duelo

El presente trabajo constituye una revisión literaria que permite establecer una relación entre duelo, arte y subjetividad para poder entender cómo puede el arte intervenir dentro del proceso de subjetivación del trabajo de duelo. Inicialmente se aborda el contexto en el que nace la pregunta y porqué es importante para los agentes que podrían estar involucrados responderse la misma. Mediante diferentes teorías bajo la línea del psicoanálisis se desarrollan los conceptos de duelo, arte y subjetividad para la construcción de esta investigación. Finalmente se responde la pregunta planteada al inicio de la investigación, concluyendo así que el arte es una herramienta que hace parte de la elaboración de procesos de duelo que han mostrado que la persona puede crecer a partir de esta experiencia.