...e eles viveram felizes até seu fim.: narrativas contemporâneas sobre a morte e o morrer na literatura infantil brasileira

A proposta desta tese é analisar a abordagem dos temas da morte, do morrer, da perda e do luto pela literatura infantil brasileira contemporânea. Com base em livros disponibilizados no mercado (lojas físicas e virtuais), portanto acessíveis ao público, busca compreender como a morte é narrada em seus textos e ilustrações, conjunto que, na literatura infantil, assume papel essencial. Nesta trajetória, faz-se igualmente necessária a reflexão sobre a concepção infantilizada da infância, que, na hipermodernidade, culmina na fragilização de sua autonomia e na noção equivocada, dentre outras, de que crianças não são capazes de vivenciar dores intensas e devem ser poupadas do contato com a morte. A abordagem dos livros de literatura infantil sobre a morte torna ainda imprescindível colocar em discussão as possibilidades que a literatura proporciona para a compreensão do homem diante deste evento no contexto histórico e social hipermoderno. Para tanto, o percurso escolhido desconstrói a noção vigente sobre a literatura, na qual é considerada como elemento ilustrativo, reconhecendo-a como importante recurso para as ciências humanas e sociais. Para além desta proposta, cabe ainda considerar a literatura não a partir de uma perspectiva utilitarista (o ler é importante), nem tão pouco como um recurso meramente terapêutico, mas como perspectiva de ressignificação de experiências de vida, de conhecimento do humano, de abertura para o outro e de inserção social e política. Num movimento recíproco, lemos e somos lidos pelos textos e pelas imagens; construímos nossas narrativas ao mesmo tempo em que elas nos constroem. Neste sentido, nosso momento histórico é uma folha em branco que traz em si o potencial de escrevermos as próximas linhas, páginas, capítulos... até o fim

Produção literária: tecer o imaginário, espaço preenchido da margem

O objetivo deste estudo é analisar como a prática da produção literária interfere, positivamente, na trajetória de indivíduos que se encontram em situação de vulnerabilidade social. A investigação deu-se no Centro Cultural Cartola, situado na comunidade da Mangueira na cidade do Rio de Janeiro, espaço que favorece a experiência individual e social de crianças e jovens por meio de ferramentas pedagógico-culturais: dança, orquestra de violinos, música, capoeira, judô, balé, oficinas literárias de leituras e de composições de texto, que possibilitam a criação de valores culturais da comunidade e dos indivíduos pelo processo de identificação. A oficina Produção Literária: Tecer o Imaginário teve início em maio de 2011, com propostas de estímulo à criação e à leitura de textos ficcionais, possibilitando que a narrativa como um vetor de (re)construção do sujeito e do coletivo, sob o ponto de vista ético e estético. A fase investigativa constou de oficinas de literatura apresentadas de duas formas: Leitura e escrita em grupos pequenos - ou individuais. O trabalho de campo da nossa pesquisa qualitativo-participativa requereu que fizéssemos um recorte espacial de nossa experiência, para que à partir dai pudéssemos inserir o recorte teórico que fosse factível ao nosso objeto de investigação. Importava a dinâmica da ação dos atores sociais. A pesquisa, estruturada sobre a ação, revelou-se detentora de inúmeras possibilidades onde o imaginário se apresenta. A interação por meio de falas que estimulam a imaginação e a reflexão exerce influência no grupo e no indivíduo na construção de si e de seu mundo. Como o objetivo da pesquisa não se adequava somente à prática oral, de contar e ouvir estórias, mas de estimular os atores à inventar e escrevê-las percebemos que este modo prevaleceu. Por exigência de que a criança dominasse de alguma forma essa modalidade, sobretudo porque o ato de escrever validava as histórias inventadas por elas e as dispostas por outras pessoas nos livros. Visto que oralidade pode dispersar a entrada da criança em seu mundo imaginário, tendo importância maior para crianças muito pequenas que não entraram ainda no mundo da linguagem. A maneira que conduzíamos a pesquisa era sempre no sentido de estimular o imaginário, capturando-o, e a partir disso inseri-lo no mundo da linguagem, da simbolização. Para Minayo (1992), O método é o próprio processo do desenvolvimento das coisas.... Nesse sentido, surgia, daquela prática, um texto/sujeito, cujas palavras eram um tronco donde se espalhavam uma infinidade de ideias criativas. O resultado da investigação constatou que a criação ficcional, estimula e desenvolve o imaginário e as representações simbólicas empobrecidas. Evidenciando o quanto é gratificante e prazeroso para crianças e jovens suas participações em atividade que fazem do campo educativo e terapêutico um campo de aventura. Observar o efeito reparador da literatura no individuo, e de consolo nos momentos de lutos e de crises de toda ordem foi evidente em situação fronteiriça, pelo uso do mundo interno dessa potente ferramenta psicopedagogica como fortalecimento psicoemocional

Search/ing for missing people: families living with ambiguous absence

Families of missing people are often understood as inhabiting a particular space of ambiguity, captured in the phrase ‘living in limbo’ (Holmes, 2008). To explore this uncertain ground, we interviewed 25 family members to consider how human absence is acted upon and not just felt within this space ‘in between’ grief and loss (Wayland, 2007). In the paper, we represent families as active agents in spatial stories of ‘living in limbo’, and we provide insights into the diverse strategies of search/ing (technical, physical and emotional) in which they engage to locate either their missing member or news of them. Responses to absence are shown to be intimately bound up with unstable spatial knowledges of the missing person and emotional actions that are subject to change over time. We suggest that practices of search are not just locative actions, but act as transformative processes providing insights into how families inhabit emotional dynamism and transition in response to the on-going ‘missing situation’ and ambiguous loss (Boss, 1999, 2013).

Experiences of the foster care process in the Republic of Ireland: retrospective accounts from biological children of foster carers

This thesis examines the experiences of the biological children of foster carers. In particular it explores their experiences in relation to inclusion, consultation and decision-making. The study also examines the support and training needs of birth children in foster families. Using a qualitative methodology in-depth, semi-structured interviews were conducted with fifteen birth children of foster carers aged between 18 and 30 years. The research findings show that for the majority of birth children, fostering was overall a positive experience which helped them develop into individuals who were caring and nonjudgemental. However, from the data collected in this study, it is clear that fostering also brings a range of challenges for birth children in foster families, such as managing feelings of loss, grief, jealousy and guilt when foster children leave. Birth children are reluctant to discuss these issues with their parents and often did not approach fostering social workers as they did not have a meaningful relationship in order to discuss their concerns. The findings also demonstrate that birth children undertake a lot of emotional work in supporting their parents, birth siblings and foster siblings. Despite the important role played by birth children in the fostering process, this contribution often goes unrecognised and unacknowledged by fostering professionals and agencies with birth children not included or consulted about foster care decisions that affect them. It is argued here that birth children are viewed by foster care professionals and agencies from a deficit based perspective. However, this study contends that it is not just foster parents who are involved in the foster care process, but the entire foster family. The findings of this study show that birth children are competent social actors capable of making valuable contributions to foster care decisions that affect their lives and that of their family.

A qualitative analysis of parental coping with an early diagnosis of hearing loss in Ireland

The recent implementation of Universal Neonatal Hearing Screening (UNHS) in all 19 maternity hospitals across Ireland has precipitated early identification of paediatric hearing loss in an Irish context. This qualitative, grounded theory study centres on the issue of parental coping as families receive and respond to (what is typically) an unexpected diagnosis of hearing loss in their newborn baby. Parental wellbeing is of particular concern as the diagnosis occurs in the context of recovery from birth and at a time when the parent-child relationship is being established. As the vast majority of children with a hearing loss are born into hearing families with no prior history of deafness, parents generally have had little exposure to childhood hearing loss and often experience acute emotional vulnerability as they respond to the diagnosis. The researcher conducted in-depth interviews primarily with parents (and to a lesser extent with professionals), as well as a follow-up postal questionnaire for parents. Through a grounded theory analysis of data, the researcher subsequently fashioned a four-stage model depicting the parental journey of receiving and coping with a diagnosis. The four stages (entitled Anticipating, Confirming, Adjusting and Normalising) are differentiated by the chronology of service intervention and defined by the overarching parental experience. Far from representing a homogenous trajectory, this four-stage model is multifaceted and captures a wide diversity of parental experiences ranging from acute distress to resilient hopefulness

Reflections on Children

In the Fall 2004, while preparing my dissertation project “Reflections on children,” I realized that whether art songs, operatic arias or scenes, the classical repertory offers a wide variety of masterpieces regarding all aspects of children’s life. My first dissertation recital is called “Journeys” and was performed on December 6th 2004 at 8:00pm in the Tawes Recital Hall. Change is the only inevitable condition in life and as such, it has been thought-provoking to many poets and composers. The narrator in Mahler’s Wayfarer Songs experiences the pain of love for the first time and emerges transformed into an adult. The narrator in Barber’s Knoxville is an adult looking back at his journey in an attempt to understand himself. The mothers in Britten’s Charm of Lullabies each make every effort to accept the changes in their own life after the birth of her baby. Finally, both Brahms’ songs are about risks and losses. “Destinies” is the title of the second dissertation recital as it attempts to capture the dark fate of Mignon and of Rückert/Mahler’s children. It was performed on April 8th 2005 in the Tawes Recital Hall. Mignon’s grief is portrayed through songs full of sadness and hopelessness in mourning of a long lost childhood. Rückert wrote 425 Kindertotenlieder in memory of his children’s deaths over a period of twenty years and Mahler orchestrated five of them. Mahler’s choices deal with light and darkness, symbolizing eternal life and hope versus despair and death, in both the literal and the literary sense. Finally, the third dissertation recital called “Blessings” was performed on May 19th 2005 in the Tawes Recital Hall. It relies on the evocation of moods and scenes created by a variety of composers and poets. Poulenc’s La Courte Paille are brief works in the style of a child’s song with unrelated and unexpected images juxtaposed, creating a sense of inner monologues. John Greer’s House of Tomorrow, Guastavino’s Cradle Songs and the rest of the composers offer wonderful pieces of immense power and expression in their directness and sensitive contour.

Young caregivers in the end-of-life setting: a population-based profile of an emerging group.

PURPOSE: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence. FINDINGS: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief. CONCLUSION: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

Meeting the emotional needs of parents who have a child with complex needs

The physical and financial demands of caring for a child with complex needs are acknowledged by health professionals. However, the emotional needs of parents are not often recognized by health professionals until parents are at a heightened level of stress. This paper is based on a literature review of current articles, research papers and government documentation. The focus is on the emotional impact to parents who have a child with complex needs, particularly at the point of diagnosis. The paper explores how health professionals, and nurses in particular, should meet the emotional needs of parents in order to support them more effectively. Giving birth to a child with severe health problems impacts upon parents at an emotional time of transition, particularly if there were no concerns identified during pregnancy. For some parents a grief response or state of chronic sorrow may be triggered. The reality of caring for a baby who is critically ill or disabled can be an enormous and unexpected shock for both parents. Parents need emotional support and guidance, as they may have to change their expectations for their child’s development and even life span. It is important for nurses to realise that if parents’ emotional needs are unmet it can lead to clinical depression or mental illness. Primary support often comes from parent support groups rather than health professionals. The review highlights factors affecting parents’ emotions and discusses how early support, home visits and practical help can all help to alleviate parents’ emotional stress.

Meeting the emotional needs of parents who have a child with complex needs

The physical and financial demands of caring for a child with complex needs are acknowledged by health professionals. However the emotional needs of parents are not often recognised by health professionals until parents are at a heightened level of stress. This paper is based on a literature review of current articles, research papers and government documentation. The focus is on how health professionals, and nurses in particular should meet the emotional needs of parents who have child with complex needs, particularly at the point of diagnosis. Giving birth to a child with severe health problems impacts upon parents at an emotional time of transition, particularly if there were no concerns identified during pregnancy. For some parents a grief response or state of chronic sorrow may be triggered. The reality of caring for a baby who is critically ill or disabled can be an enormous and unexpected shock for both parents. Parents need emotional support and guidance, as they may have to change their expectations for their child’s development and even life span. Primary support often comes from parent support groups rather than health professionals. The review discusses how home visits, practical help and early support can all help to alleviate stress. It is important for nurses to realise that if parents’ emotional needs are unmet they can lead to clinical depression or mental illness. This literature review looks at the emotional impact on parents and explores how nurses can address this issue in order to support parents more effectively. It identifies key areas that nurses could address that would help alleviate parents’ emotional stress.

The effects of sudden paternal death on young people and their family relationships: some implications for practice

The importance for children and young people to be able to communicate openly about the death of a parent is evident from the literature. This small-scale investigation uses a case-study approach to illustrate the impact on siblings of the sudden death of a father. The abundance of comments from the young people in the study such as “talking is the only thing that helps” and “everybody has to get it out” emphasise the important role of communication within the family. Children tend to take their emotional cues from other family members and, paradoxically, restrict communication of their own grief in an attempt to protect others. Even if painful in the short term, certain lines of communication may need to be established if family members are to be able to support each other in dealing with the distressing experience of the death in a healthy manner. The study suggests that those who work with young people in such circumstances should take cognisance of these issues.

Death and football: An analysis of men's talk about emotions

This study is concerned with men's talk about emotions and with how emotion discourses function in the construction and negotiation of masculine ways of doing emotions and of consonant masculine subject positions. A sample group of 16 men, who were recruited from two social contexts in England, participated in focus groups on 'men and emotions'. Group discussions were transcribed and analysed using discourse analysis. Participants drew upon a range of discursive resources in constructing masculine emotional behaviour and negotiating masculine subject positions. They constructed men as emotional beings, but only within specific, rule-governed contexts, and cited death, a football match and a nightclub scenario as prototypical contexts for the permissible/understandable expression of grief, joy and anger, respectively. However, in the nightclub scenario, the men distanced themselves from the expression of anger as violence, whilst maintaining a masculine subject position. These discursive practices are discussed in terms of the possibilities for effecting change in men's emotional lives.

Bereavement needs assessment in specialist palliative care: A review of the literature

Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers.

Psychological and social profile of family caregivers upon commencement of palliative care provision

Context
Palliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized.

Objectives
We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services.

Methods
A self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire.

Results
Three hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief.

Conclusion
This study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers.

The contours of memory in post-conflict societies: enacting public remembrance of the bomb in Omagh, Northern Ireland

Drawing on the theoretical insights of Paul Ricoeur this paper investigates the geographies of public remembrance in a post-conflict society. In Northern Ireland, where political divisions have found expression through acts of extreme violence over the past 30 years, questions of memory and an amnesty for forgetting have particular resonance both at the individual and societal level, and render Ricoeur’s framework particularly prescient. Since the signing of the Belfast Agreement in 1998, initiating the Peace Process through consociational structures, discovering a nomenclature and set of practices which would aid in the rapprochement of a deeply divided society has presented a complex array of issues. In this paper I examine the various practices of public remembrance of the 1998 bombing of Omagh as a means of understanding how memory-spaces evolve in a post-conflict context. In Omagh there were a variety of commemorative practices instituted and each, in turn, adopted a different contour towards achieving reconciliation with the violence and grief of the bombing. In particular the Garden of Light project is analysed as a collective monument which, with light as its metaphysical centre, invited the populace to reflect backward on the pain of the bombing while at the same time enabling the society to look forward toward a peaceful future where a politics of hope might eclipse a politics of despair.

Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients

Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death.