“They are like family”: The emotional cost experienced by nurses when caring for haemodialysis patients

Background Haemodialysis (HD) nursing is characterised by frequent, intense interactions with patients over long periods of time resulting in a unique nurse-patient relationship. Due to the life-limiting nature of end-stage renal failure, nurses are likely to have repeated exposures to the death of patients with whom they have formed relationships. Repeated exposure to patient death translates into frequent grief experiences. There is scant literature on the psychological impact of patient death for nurses working in the HD setting. Aims To explore HD nurses experiences of patient death and coping mechanisms used. Methods A sequential mixed method study investigating job satisfaction, stress and burnout found that HD nurses had high levels of stress and burnout. These results were explored in more detail during 8 semi-structured interviews with HD nurses. Interviews were audio-recorded, transcribed verbatim and subjected to thematic analysis. Results Three themes were identified that highlight the stress experienced by nurses when a haemodialysis patient dies. The first theme, “quazi-family” describes the close relationship which forms between nurses and patients. The “complicated grief” theme outlines the impact of death on HD nurses, and the final theme, “remembrance” explains some of the coping mechanisms used in the grieving process. Conclusion Nurses develop individual coping mechanisms to accommodate the grief and loss experienced when a “close” patient dies. The grieving process caused by the death of patient’s needs to be recognised by nurses and nurse managers as causing psychological stress and strain.

Acute myocardial infarction: The spouse's experience

Given the marked changes in length of hospital stay and the number of CAB procedures being performed, it is essential that health professionals are aware of the potential impact these changes could have on the spouses of patients who have undergone CAB surgery. Results from numerous quantitative studies suggest that spouses of patients undergoing CAB surgery experience both physical and emotional stress before and after their partners surgery. While such studies have contributed to our understanding, they fail to capture the qualitative experience of what it is like to be a spouse of a partner who has undergone CAB surgery, specifically in the context of changes in the length of hospital stay. The objective of this study was to describe the experience of spouses of patients who had recently undergone CAB surgery. This study utilised a qualitative methodology and was guided by Husserl's phenomenological approach. Data was obtained from four participants by in depth open ended interviews. This study has implications for all health professionals involved in the care of patients and their families undergoing CAB surgery. If health professionals are to provide holistic care, they need to understand more fully the qualitative experience of spouses of critically ill patients. The purpose of this study was to describe the experience of spouses whose partner's had suffered an acute myocardial infarction (MI). The study was guided by a phenomenological approach. This qualitative type of study is new to nursing inquiry, therefore this investigation creates links with understanding the notion of psychosocial nursing processes with the leading cause of death in Australia. Literature concerning the spouses of myocardial infarction patients has predominantly employed quantitative methods, as such results have centred on structured data collection, and categorised outcomes. Such methods have failed to capture the insight of what it is like to be a spouse of a patient who has had an MI. In-depth interviews were conducted with three participants (2 females and 1 male) about their experiences. The major findings of the study were categorised under the headings of uncertainty, emotional turmoil, support information and lifestyle change. Conclusions suggest that spouses are neglected by health professionals and they require as much psychosocial support as their partner in terms of cardiac discharge planning. Spouses need to be granted special consideration, as they progress through a grieving and readjustment process in coming to terms with: (1) the need to support and care for their partner, (2) changes in their roles and (3) adjustments to their current lifestyles.

Decision-making in a death investigation: Emotions, families and the coroner

The role of the coroner in common law countries such as Australia, England, Canada and New Zealand is to preside over death investigations where there is uncertainty as to the manner of death, a need to identify the deceased, a death of unknown cause, or a violent or unnatural death. The vast majority of these deaths are not suspicious and thus require coroners to engage with grieving families who have been thrust into a legal process through the misfortune of a loved one's sudden or unexpected death. In this research, 10 experienced coroners discussed how they negotiated the grief and trauma evident in a death investigation. In doing so, they articulated two distinct ways in which legal officers engaged with emotions, which are also evident in the literature. The first engages the script of judicial dispassion, articulating a hierarchical relationship between reason and emotion, while the second introduces an ethic of care via the principles of therapeutic jurisprudence, and thus offers a challenge to the role of emotion in the personae of the professional judicial officer. By using Hochschild's work on the sociology of emotions, this article discusses the various ways in which coroners manage the emotion of a death investigation through emotion work. While emotional distance may be an understandable response by coroners to the grief and trauma experienced by families and directed at cleaner coronial decision-making, the article concludes that coroners may be better served by offering emotions such as sympathy, consideration and compassion directly to the family in those situations where families are struggling to accept, or are resistant to, coroners' decisions.

“It’s like a problem that doesn’t exist”: The emotional well-being of mothers caring for a child with brain injury.

Background: Although research has shown that significant burden and adverse psychological impact are associated with caring for a child with brain injury, limited knowledge exists concerning the qualitative experience and impact of this burden.
Objective: To provide an account of the experiences of mothers who care for a childhood survivor of brain injury.
Research design: Postal survey.
Methods and procedures: A self-report questionnaire was sent to a consecutive sample of mothers (n=86) of children (aged 8-28) with acquired brain injury, registered with a UK children’s brain injury charity. Five essay style questions enabled mothers to reflect on and describe at length their caring experiences, with particular emphasis placed on the perceived impact on emotional well-being.
Main outcomes and results: Thematic analysis identified five key themes: Perpetually Anxious, The Guilty Carer, The Labour of Caring, A Self-Conscious Apologist and Perpetually Grieving. Collectively, these themes highlight two core processes shaping mothers’ caring experiences and concomitant mental well-being. Firstly, the collective and enduring nature of caregiver burden over time. Second, the crucial role played by socio-cultural values in perpetuating caregiver burden.
Conclusions: Societal norms, particularly those relating to the nature and outcome of brain injury and motherhood, serve to marginalise mothers and increase feelings of isolation. Findings suggest the value of peer support programs as an effective means of providing appropriate social support.

Stress e adaptação no processo de luto materno : um estudo exploratório

Tese de mestrado, Psicologia (Secção de Psicologia Clínica e da Saúde, Núcleo de Psicologia Clínica Sistémica), Universidade de Lisboa, Faculdade de Psicologia, 2014

Évaluation constructiviste de l’application du Guide des meilleures pratiques de soins aux endeuillés auprès des familles ayant vécu une perte périnatale

Cette étude avait pour but d’évaluer, à partir d’un processus de co-construction avec les personnes concernées, dans un contexte de 1ère ligne, la mise en application d’interventions infirmières inspirées du Guide des meilleures pratiques de soins pour les endeuillés (GMPSE) auprès d’un couple ayant vécu une perte périnatale au cours des six dernier mois. Un devis de recherche d’étude de cas basé sur la démarche d’évaluation de la quatrième génération de Guba et Lincoln (1989) a été utilisé. Une infirmière expérimentée auprès des familles endeuillées, s’est inspirée de la guidance du GMPSE pour intervenir auprès d’un couple lors de cinq rencontres thérapeutiques, dont quatre ont été précédées d’une entrevue avec les personnes concernées . Ces entrevues ont permis à ces personnes d’identifier ensemble les interventions les plus utiles et les moins utiles. Le verbatim des rencontres et entrevues ont été enregistrées et transcrites à des fins d’analyses qualitatives, Les résultats de ces analyses font ressortir la pertinence des interventions inspirées du GMPSE et l’apport spécifique de la pratique infirmière auprès de la population visée. Il appert que la sensibilisation des décideurs et des cliniciens aux enjeux des personnes endeuilles soit nécessaire pour favoriser l’implantation du Guide dans les milieux de soins. Enfin, une meilleure appropriation du GMPSE est recommandée autant dans le cadre de la formation, que de la recherche et de la pratique en sciences infirmières.

Des pères non-agresseurs face au dévoilement de l'agression sexuelle de leur enfant : impact psychologique et soutien paternel

Les agressions sexuelles envers les enfants sont un fléau social important. Elles portent atteinte à l’intégrité physique et psychologique des enfants qui en sont victimes, entraînant des conséquences délétères pour l’enfant et ses parents. Ces derniers sont d’ailleurs considérés comme des personnes clés dans le rétablissement des enfants. Toutefois, les connaissances scientifiques dans ce domaine ont été principalement acquises auprès des mères, reléguant ainsi le père à une place secondaire. Cette thèse a pour objectif général d’élargir notre compréhension du vécu et du rôle des pères ayant à faire face au dévoilement de l’agression sexuelle de leur enfant. La présente thèse est composée de deux articles empiriques. L’objectif du premier article est de décrire le vécu des pères non agresseurs ayant un ou plusieurs enfants victimes d’agression sexuelle extra ou intrafamiliale sous l’angle de leurs réactions émotionnelles, cognitives et comportementales à la suite du dévoilement de l’AS. Pour ce faire, 17 pères provenant soit du Centre d’Expertise Marie-Vincent de Montréal, soit du Centre d’Intervention en Abus Sexuels pour la Famille de Gatineau ou encore soit de la population générale et ayant un ou plusieurs enfants victimes d’agression sexuelle intra ou extra-familiale ont été rencontrés pour une entrevue individuelle semi-dirigée. Les résultats démontrent que les pères rencontrés dans le cadre de cette étude vivent un véritable choc psychologique, s’apparentant à un traumatisme secondaire, à l’annonce du dévoilement. Cette étude a également mis en lumière la mise en place d’un travail de deuil chez les pères qui sont confrontés à la perte de l’innocence de leur enfant. Les objectifs du deuxième article est de décrire les répercussions du dévoilement de l’agression sexuelle sur la façon dont les pères s’engagent auprès de leurs enfants et de dégager les dimensions du soutien paternel offert à l’enfant. L’analyse du discours de 17 pères ayant vécus le dévoilement d’une agression sexuelle par leur(s) enfant(s) suggèrent que le dévoilement peut être considéré comme un élément de rupture dans le lien à l’enfant nécessitant une adaptation à cette nouvelle réalité. Bien que l’ensemble pères rencontrés expriment leurs inquiétudes pour leur(s) enfant(s) et leur désir de le(s) soutenir, les résultats mettent en évidence les difficultés pour certains pères de s’engager auprès de leurs enfants en raison soit d’une détresse psychologique personnelle importante, soit d’une ambivalence à l’égard de l’enfant ou encore en raison d’une sensation d’inconfort ressentie lors des contacts physiques au cours des soins primaires à prodiguer ou des situations de jeu physique. Leurs propos témoignent également de leurs volontés et de leurs capacités à aider l’enfant à composer avec les conséquences de l’agression sexuelle subie. La mise à jour d’une nouvelle dimension spécifiquement paternelle soit la capacité d’ouvrir son enfant victime d’AS sur le monde extérieur et ainsi jouer un rôle dans le développement de sa confiance en soi apparait comme un résultat novateur de la présente thèse. Les implications cliniques concernant les résultats obtenus dans le cadre de cette thèse ainsi que les pistes de recherche sont finalement abordées.

Der Fall Sebnitz

In dem vorliegenden Aufsatz soll den Ereignissen in Sebnitz um den Tod des kleinen Joseph im Sommer 2000 nachgegangen werden. Dieses Ereignis ist voll von kollektiven Wahrnehmungsverzerrungen und eignet sich gut, die Möglichkeiten kritisch-psychologischer Perspektiven aufzuzeigen. Psychologische Betrachtungsweisen und Analysen können helfen, die politischen Ereignisse und Zusammenhänge einem vertieften Verstehen zuzuführen.

El duelo en la familia del paciente oncológico : de las características a la intervención cognoscitivo comportamiental

Esta revisión tuvo como objetivo realizar una exploración en la literatura sobre el proceso de duelo en la familia del paciente con Cáncer, desde una perspectiva cognoscitivo comportamental. Se muestran las emociones, las cogniciones y las conductas experimentadas por las familias durante el curso de la enfermedad; se describe el proceso de duelo de acuerdo al ciclo vital y familiar, los tipos de duelo que pueden surgir, los factores que contribuyen al desarrollo de un duelo normal o un duelo complicado, las estrategias y técnicas de intervención del duelo desde la perspectiva cognoscitivo conductual, programas de intervención específicos para el asesoramiento del duelo en familias de pacientes con enfermedad crónica e, intervenciones cognoscitivo comportamentales para el manejo del duelo familiar. Se concluye que el cáncer es una enfermedad que afecta significativamente la vida del paciente y de su familia, durante la enfermedad y después de la muerte. A pesar de esto la atención psicológica prestada a las familias suele ser insuficiente. El enfoque cognoscitivo comportamental ha creado protocolos para ayudar a la familia durante el proceso oncológico.

Family caregivers of the mentally ill and adaptive coping

The issue investigated in this thesis concerned the adaptive coping strategies that caregivers of the mentally ill adopt at different stages of encounter with their family member’s illness. Specifically, family caregivers’ responses to the illness were investigated within the parameters of the Spaniol and Zipple (1994) 4-stage model of the evolution of caregivers’ responses to mental illness. The accuracy of the model’s representation of the experience of caregivers across all kinship relationships to the care-recipient was evaluated. Spaniol and Zipple proposed four stages which they termed (1) Discovery/Denial, (2) Recognition/Acceptance, (3) Coping and (4) Personal/Political Advocacy. The first stage is characterised by persistent denial of mental illness and seeking answers from multiple sources. The second stage involves caregivers’ expectations of professionals providing answers when the illness is recognised. At this stage caregivers experience guilt, embarrassment and blame. The cyclical nature of the illness impedes acceptance and caregivers experience a deep sense of loss and crisis of meaning as they gradually accept the reality of the situation. In the third stage coping replaces grieving and the issues encountered include loss of faith in professionals, disruption to family life and recurrent crises. Belief in family expertise grows and the focus of coping changes. The fourth stage proposes that caregivers become more assertive, self-blame decreases and the focus is upon changing the system. New meanings and values are integrated. This study found that the model did not accurately describe the experience of all caregivers. Caregiver did not deny mental illness and adaptive coping occurred throughout all stages. Coping evolved as the issues encountered changed and was independent of resolution of grief. The issues encountered were more extensive than the model proposed and differed according to kinship relationship to the care recipient. The ways in which adaptive coping evolved were identified, as were the issues and their accompanying responses. Caregivers coped by adaptively responding to the requirements of care provision, maintaining a sense of self worth and generating positive effect.

Loss and grief in the workplace. What can we learn from the literature?

Purpose – The purpose of this paper is to determine how Australian workplaces, their managers and employees respond to those who are grieving at work, as a result of chronic or terminal illness, or caring for those with chronic or terminal illness. The review draws on Australian and relevant international literature and seeks to answer this question.
Design/methodology/approach – A literature review was undertaken in preparation for an Australian study examining workplace supports for people who are grieving – because they are carers, have experienced a death, or are balancing their own illness with their work. Using a range of search terms, the literature was searched for relevant work between 1980 and 2010. The search found examples of workplace supports throughout the world and some developing Australian literature.
Findings – Despite illness and death occurring at any stage of a person's life, there is little research that identifies workplace issues associated with grief and loss. And while workplace legislation allows for minimal supports, there was evidence that some workplaces have begun to offer flexibility for work life balance.
Practical implications – Effective workplace supports will involve individual and workplace responses, but also require legislative approaches in order to effect broad-based system change.
Originality/value – The paper compares Australian and international literature about workplace supports and provides an overview of the issues arising.

The end of the rainbow

The End of the Rainbow is a documentary film about music, about community and a very special place. When the live music venue “The Rainbow Hotel” in the Melbourne suburb of Fitzroy is forced to close down publican Chickk sets out to accommodate the many musicians and customers grieving its closure with a final week of musical activity in which there is organisational chaos, dancing, laughs, beer (lots of), and great music. It is a week of celebration as musicians pay homage to mark “the End of an Era”, but it is also a statement about community places and a protest against property development at the expense of cultural heritage, specifically Australian live music. It’s also a love story with a dramatic twist...

‘In joy we prepare our lessons’: Reading Camus’ Noces via their reception of the Eleusinian mysteries

Nobel Prize winning author Albert Camus situates his meditations in both the opening and closing essays in his 1937 collection Noces by referring to the classical Eleusinian mysteries centring around the myths of Dionysus and the goddesses Demeter and Persephone. Noces’ closing piece ‘The Desert’ directly evokes the two levels of initiation involved in the classical Eleusinian cult in a way which prompts us to reframe the preceding essays beginning at Tipasa as akin to a single, initiatory trajectory. The kind of ‘love of life’ the opening ‘Nuptials at Tipasa’ had so marvellously celebrated, we are now informed, is not sufficient by itself. The entire round of these four essays, whose framing suggest four seasons (Spring in Tipasa, Summer at Algiers, then Autumn in Florence), are intended by Camus to enact just what the title, Noces, suggests in the context of the mysteries: namely, that hieros gamos or sacred union of man with nature or the gods at the heart of the ancient cults, tied very closely at Eleusis with reverence for the fecundity of nature, reborn each year with the return of Persephone from Hades to her grieving mother Demeter.

Struggling with food and eating - life after major upper gastrointestinal surgery

Purpose

Few qualitative studies have explored patients' experience of food and eating following major upper gastrointestinal cancer surgery. The aim of this article was to explore the longer-term impact of different types of major upper gastrointestinal surgeries on people's relationship with food.

Methods

Twenty-six people having had major upper gastrointestinal cancer surgery greater than 6 months ago participated in semi-structured interviews. These interviews aimed to explore a person's physical, emotional and social relationship with food and eating following surgery. Interviews were tape-recorded, transcribed and analysed using an inductive thematic analysis approach.

Results

Interview findings revealed a journey of adjustment, grieving and resignation. The physical symptoms and experiences of people differed between types of surgery, but the coping mechanisms remained the same.

Conclusions

The grieving and resignation people experienced suggest adjustment and coping similar to that of someone with a chronic illness. Remodeling of health services is needed to ensure this patient group receives ongoing management and support.

Perda e luto: Vivências de mulheres que interromperam a gestação por malformação fetal letal

The scope of this study was to investigate the grieving experiences of women who terminated pregnancies under judicial authorization, due to life-incompatible fetal malformation. Ten women attended in the Fetal Medicine Department of Botucatu Clinical Hospital participated in the study. Data collection was conducted by means of semi-structured interviews forty days after termination. The interviews were recorded and transcribed in full, with the data analyzed from the thematic content analysis perspective. The results revealed that the mothers sought explanations and meanings for the loss, with religious responses and self-blame being very frequent. The reports were marked by feelings of sadness, longing and sensations of emptiness due to the loss of the child, revealing the need of the mothers to dwell on the issue. The mothers were and continued to be linked to their children; the termination of the pregnancy, although being a choice to minimize the pain of an inevitable loss, did not spare the women from experiences of great suffering. The study includes input for the discussion and planning of health approaches and care for women who terminate their pregnancy due to lethal fetal malformation, by means of judicial authorization.