Out of the wave: the meaning of suffering and relieved suffering for survivors of the tsunami catastrophe. An hermeneutic‐phenomenological study of TV‐interviews one year after the tsunami catastrophe, 2004

Scand J Caring Sci; 2010; 24; 707–715
Out of the wave: the meaning of suffering and relieved suffering for survivors of the tsunami catastrophe. An hermeneutic‐phenomenological study of TV‐interviews one year after the tsunami catastrophe, 2004 The tsunami catastrophe, 26th December 2004, is one of a number of catastrophes that has stricken mankind. Climate reports forecast that natural disasters will increase in number in the future. Research on human suffering after a major catastrophe, using a caring science perspective, is scarce. The aim of the study was to explore the meaning of suffering and relieved suffering of survivors of the tsunami catastrophe, 26th December 2004. An explorative study design, inspired by the French philosopher Paul Ricoeur’s hermeneutic‐phenomenology, was used. Interviews made by the Swedish Television (SVT) in connection with the 1 year anniversary were carried out on site in the disaster area and in Sweden. The text analysis revealed four main themes: ‘An incomprehensible event’, ‘A heavy burden’, ‘Help that helps’, and to ‘Being changed in a changed life situation’. The findings were mainly interpreted in light of Paul Ricoeur’s thinking on suffering, quilt, forgiveness, time and narrative. The first year after the loss of loved ones in the tsunami catastrophe, 2004, was like starting an inner as well as an outer journey. This journey was experienced as living with the heavy burden of an incomprehensible event. Help that helped was mediated by consolers who endured the suffering of the other. An ‘enduring courage’ is a key moral virtue to encounter the alienation of the sufferer and how it in turn alienates from the sufferer. It is also important to recognize that the complexity of the world of those who have lost loved ones in major catastrophes includes possibilities for reconciliation with the loss. The reconciliation creates hope that opens up for being changed in a changed life situation.     

Life beyond cancer: women’s experiences 5 years after treatment for gynaecological cancer

Scand J Caring Sci; 2010; 24; 799–807
Life beyond cancer: Women’s experiences 5 years after treatment for gynaecological cancer The number of long‐term survivors after cancer is increasing, mainly as a consequence of more efficient treatment. This creates a need for knowledge about experiences of life after cancer. The aim of this study is to gain a deeper understanding of lived experience of long‐term cancer survivors and how they experienced cancer care. A qualitative study was performed, based on 32 in‐depth interviews with 16 women declared as long‐term survivors, aged 39–66. The first interview was made 5 years after treatment and the second a year later. The study has a phenomenological–hermeneutical approach in which the women’s own experiences are the basis for understanding their life‐world. The long‐term surviving women experienced profound changes in their lives and had to adapt to new ways of living. Three core themes were identified: living with tension between personal growth and fear of recurrence: the women spoke of a deep gratitude for being alive and of basic values that had become revitalized. They also lived with a preparedness for recurrence of cancer. Living in a changed female body: the removal of reproductive organs raised questions about sexual life and difficulties related to menopause. Feeling left alone – not receiving enough information and guidance after treatment: the process of sorting things out, handling anxiety, bodily changes and menopause were described as a lonesome journey, existentially and psycho‐socially. The findings are discussed in relation to Heidegger’s perspective of anxiety towards death, existential loneliness and humans as self‐interpreting beings. Surviving cancer entails living with profound life‐changes, demanding as well as enriching. Existing follow‐up regimes need to sharpen focus on psycho‐social aspects, information and guidance. Additional follow‐up programmes, focusing solely on the individual woman and her specific needs, are necessary.     

Interwoven histories: Mental health nurses with experience of mental illness,qualitative findings from a mixed methods study

The effects of mental health nurses’ own experience of mental illness or being a carer have rarely been researched beyond the workplace setting. This study aimed to explore how the experience of mental illness affects mental health nurses’ lives outside of and inside work. A sample of 26 mental health nurses with personal experience of mental illness took part in semistructured interviews. Data were analysed thematically using a six‐phase approach. The analysis revealed the broad context of nurses’ experiences of mental illness according to three interwoven themes: mental illness as part of family life; experience of accessing services; and life interwoven with mental illness. Participants typically described personal and familial experience of mental illness across their life course, with multiple causes and consequences. The findings suggest that nurses’ lives outside of work should be taken into account when considering the impact of their personal experience of mental illness. Similarly being a nurse influences how mental illness is experienced. Treatment of nurses with mental illness should account for their nursing expertise whilst recognizing that the context for nurses’ mental illness could be much broader than the effect of workplace stress.     

Life beyond severe traumatic injury: an integrative review of the literature.

It is only recently that recognition of the serious and debilitating sequelae of trauma has prompted exploration of outcomes beyond survival, such as disability, health status and quality of life. This paper aims to review the literature describing outcomes following severe traumatic injury to provide clinicians with a greater understanding of the recovery trajectory following severe trauma and highlight the issues faced by those recovering from such injury. Electronic databases, published reference lists and the Internet were searched to identify relevant literature. The heterogeneous nature of published literature in this area prohibited a systematic approach to inclusion of papers in this review. Trauma survivors report significant sequelae that influence functional status, psychological wellbeing, quality of life and return to productivity following severe injury. Key themes that emerge from the review include: current trauma systems which provide inadequate support along the recovery trajectory; rehabilitation referral which is affected by geographical location and provider preferences; a long-term loss of productivity in both society and the workplace; a high incidence of psychological sequelae; a link between poor recovery and increased drug and alcohol consumption; and valued social support which can augment recovery. Future research to evaluate interventions which target the recovery needs of the severely injured patients is recommended. Particular emphasis is required to develop systematic, sustainable and cost-effective follow-up to augment the successes of existing acute trauma services in providing high quality acute resuscitation and definitive trauma management.     

The first 12 weeks following discharge from hospital: the experience of Gujarati South Asian survivors of acute myocardial infarction and their families

The period following discharge from hospital after an acute myocardial infarction (MI) is associated with vulnerability and psychosocial and physical morbidity for many survivors and their families. It is reported that people experience interpersonal, family and financial problems, self-care obstacles, work and physical difficulties. Culture and ethnicity undeniably influence the illness experience and the process of recovery and adjustment. This study investigated the perceptions of Gujarati survivors of acute MI and their families in Leicester, United Kingdom in the first 12 weeks following discharge in order to develop a profile of their health seeking beliefs and needs. Thirty-one interviews with 19 Gujarati MI survivors and their families (representing approximately 31 hours of dialogue) were analysed using grounded theory. Qualitative data revealed a period of vulnerability not only for survivors but also their families as they processed recent events and faced the future. Data analysis revealed nine interrelated themes describing the post-discharge experience for Gujarati survivors and their families. Data revealed that normal life was often markedly changed by the MI experience. Reflection, contemplation and resignation characterize this period of vulnerability. Overwhelmingly, data analysis revealed that the Gujarati culture, beliefs and customs influenced the recovery experience.     

Using the illness trajectory framework to describe recovery from traumatic injury

This paper seeks to highlight the utility of the Corbin and Strauss Chronic Illness Trajectory Framework in describing recovery from traumatic injury and encourages consideration of its implementation into contemporary trauma nursing (Corbin and Strauss, 1991; 1992). To date, few such frameworks have been proposed to sensitize health professionals to the path of recovery following traumatic injury. Although this framework was initially conceived for use in the domain of chronic illness, the lasting effects of severe traumatic injury have significant parallels to chronic conditions such as stroke (Burton, 2000) and multiple sclerosis (Miller, 1993) to which the framework has previously been applied. This paper demonstrates the Trajectory Framework as a useful structure to potentially enhance the development of post-discharge interventions for trauma survivors and encourages consideration of its implementation into the nursing management of this complex patient group.     

Surviving severe COVID-19: Interviews with patients,informal carers and health professionals

Background

The COVID-19 pandemic has been associated with an unprecedented number of critical care survivors. Their experiences through illness and recovery are likely to be complex, but little is known about how best to support them.

Aim

This study aimed to explore experiences of illness and recovery from the perspective of survivors, their relatives and professionals involved in their care.

Study design

In-depth qualitative interviews were conducted with three stakeholder groups during the first wave of the pandemic. A total of 23 participants (12 professionals, 6 survivors and 5 relatives) were recruited from 5 acute hospitals in England and interviewed by telephone or video call. Data analysis followed the principles of Reflexive Thematic Analysis.

Findings

Three themes were generated from their interview data: (1) Deteriorating fast—a downhill journey from symptom onset to critical care; (2) Facing a new virus in a hospital—a remote place; and (3) Returning home as a survivor, maintaining normality and recovering slowly.

Conclusions

Our findings highlight challenges in accessing care and communication between patients, hospital staff and relatives. Following hospital discharge, patients adopted a reframed ‘survivor identity’ to cope with their experience of illness and slow recovery process. The concept of survivorship in this patient group may be beneficial to promote and explore further.

Relevance to clinical practice

All efforts should be made to continue to improve communication between patients, relatives and health professionals during critical care admissions, particularly while hospital visits are restricted. Adapting to life after critical illness may be more challenging while health services are restricted by the impacts of the pandemic. It may be beneficial to promote the concept of survivorship, following admission to critical care due to severe COVID-19.     

Myocardial infarction: narrations by afflicted women and their partners of lived experiences in daily life following an acute myocardial infarction

Background. The review of the literature showed that many people and their family members share feelings of distress after an acute myocardial infarction. Therefore, it is important to show how the illness affects the relationship in the couple's daily life when the closest relatives involved are men. Aim. The aim was to illuminate the meaning of lived experiences in daily life after an acute myocardial infarction, as narrated by afflicted women and their partners. Methods. Nine women and their partners narrated their experiences three and 12 months after an infarction. The interview texts were then interpreted, using a phenomenological hermeneutic method, inspired by the philosophy of Ricoeur. The text was divided into meaning units that were condensed and abstracted. Two themes and eight sub‐themes were then extracted from the text. Results. The first theme was ‘living in a changed life situation’ with the sub‐themes: ‘showing consideration’, ‘taking responsibility’, ‘living side by side’ and ‘desiring what to do’. The second theme was ‘looking to the future’ with the sub‐themes: ‘feeling uncertain’, ‘feeling powerless’, ‘feeling limited’ and ‘feeling hope’. Conclusions. The results revealed that couples lived in a changed life situation, somewhat in ‘discordance’, and showed consideration to each other in order to protect the partner. There seemed to be a lack of verbal communication, but both women and their partners revealed that they sensed how their partners felt without verbal communication. In this ‘discordance’, couples may experience loneliness, in that they may not share feelings about the event and the situation it causes. Relevance to clinical practice. Women and their partner have specific needs in daily living following an acute myocardial infarction. Therefore, nurses should acknowledge the specific needs for the female patient and the partner more clearly.     

The impact of stroke consequences on spousal relationships from the perspective of the person with stroke

Aims and objectives. This paper aims to provide a subjective insight into the experience of stroke recovery within spousal relationships. The aftermath of stroke and its impact on the physical, emotional, psychological and social effects of spousal relationships are explored. Background. Many studies have examined observable functional recovery following stroke from the perspective of health care professionals. Longer‐term effects of stroke such as changes in role and perception of self can alter significantly the dynamics of spousal relationships. Despite this, little attention has been given to the subjective impact of stroke on spousal relationships. Design. A qualitative study design was adopted. Individual, audio‐taped interviews were carried out over three months. Methods. A convenience sample of 16 stroke survivors was recruited from the Stroke Nurse Specialist Register. All participants were over 18 years old and had been discharged from hospital following a diagnosis of stroke. Transcribed interviews were analysed using content data analysis to code and categorise emerging themes. Results. Poststroke, spousal relationships altered significantly in terms of sexuality, sexual desire and sexual functioning. Within their role of husband or wife, stroke survivors described a lack of control and dramatic changes in their perception of self. Conclusions. Survivors of stroke experience profound, complex and multi‐faceted difficulties in many areas of their spousal relationships, which are distressing to both them and their spouses. These have a significant impact on each individual’s quality of life particularly in the longer term. Relevance to clinical practice. Health care professionals and service providers need to understand and recognise the subjective experience of stroke and the complex difficulties that stroke survivors experience within their spousal relationships. It would appear that current service provision does not adequately address the range of needs that the stroke survivors described in this study.     

A journey in quest of meaning: a hermeneutic-phenomenological study on living with memories from intensive care

Background: In a short‐term perspective, a high incidence of psychological problems linked to memories from intensive care has been found in survivors of critical illness. Little is known about what kinds of memories patients might carry with them and what it is like to live with memories from intensive care as years go by. Aim: The aim of this study was to explore the meaning of living with memories from intensive care. Methods: A hermeneutic‐phenomenological approach. In‐depth interviews with ten former intensive care patients 10 years after their admission. Findings: Memories of bodily sensations and memories containing strong emotions were surprisingly well kept. Memories residing in the body at a prereflective level and that could be awakened without being triggered by will or conscious thought comprised an important segment of the memory spectrum. Complaints such as panic attacks and anxiety were strongly linked to these kinds of memories and experienced as flashbacks of frightening experiences that entailed strong emotions. Some informants still strove to understand experiences and reactions. Living with these memories and flashbacks was interpreted as a journey in quest of meaning. Having someone and something to live for implied strength on the journey. The presence of close relatives at the bedside provided strength to go on and someone with whom to share experiences afterwards. Conclusion: A period of critical illness and intensive care stay for treatment may leave durable traces in the patient’s life. Finding meaning of existential and ontological nature seems to be of decisive significance for how people fare in their lives after having lived through intensive care treatment. The identified journey in quest of meaning points to the need for follow‐up programmes, and we must acknowledge close relatives as important resources for the patient both at the bedside and in the subsequent process of discovering meaning in lived experience.     

Hope in orthopaedic trauma: a qualitative study

BackgroundHope is identified as an important aspect of life and recovery from illness and injury but less is known about how hope is constructed within an acute trauma care environment. An understanding of what hope means would help to identify its therapeutic potential and the challenges that exist regarding its use in practice.ObjectiveThe objective of the study was to ascertain experiences of hope on a Trauma Unit from both people living with trauma and health care professionals.DesignThe study drew on the principles of ethnography undertaking in depth qualitative interviews with 10 patients and 10 multidisciplinary members of staff, 21 h of participant observation followed by observation interviews and informal discussion with patients. Two focus groups with health care professionals were held to explore and expand initial findings. Data collection took place between March 2007 and November 2007.ResultsThe findings identified three themes: (a) moving forward, (b) finding a future and (c) realistic hopefulness. Moving forward identified hope as a dynamic and purposeful force that was important for recovery but also connected to the meaning life had for participants. Finding a future identified the challenges that exist within the process of recovery from injury. Health care professionals identified the importance of finding an acceptable future and people living with injury struggled to be hopeful whilst feeling frustrated with the process of treatment and recovery. Realistic hopefulness was the process by which health care professionals facilitated the emotional and physical progression of people living with injury through recovery.ConclusionsHealth care professionals construct hope as a fundamental aspect of their work in trauma care and people living with injury focus on suffering in the present and frame their hopes on their immediate future and the context of their lives prior to injury.     

Women's journey of recovery from sexual assault trauma: a grounded theory--part 2

The purpose of the study was to explore and analyse the journey of recovery which is undertaken by women who have been sexually assaulted, with the aim of discovering the grounded theory of recovery from sexual assault within the first six months following the event of rape. The main research question was: 'What is the journey of recovery that is undertaken by women within the first six months following sexual assault?' Another question that developed during data collection and data analysis was 'What is the meaning that women attach to recovery?' The findings are discussed under the eight concepts or categories and the context and the intervening conditions that influence the journey of recovery from sexual assault trauma. Refer to part 1 article. These are complemented with abstracts of data from the participants' voices and the related discussions. The developed theory highlights the process and the interconnectedness of the different stages of what the women experience in their journey of recovery from sexual assault trauma.     

Being devastated by critical illness journey in the family: A grounded theory approach of post-intensive care syndrome-family

ObjectivesThis study aimed to explore the meaning and structure of postintensive care syndrome experienced by families of critically ill patients.MethodsThis qualitative study applied the constructivist grounded theory approach and conducted one or two interviews with eight participants with postintensive care syndrome-family for a total of 12 interviews. The contents of the interviews were analysed through line-by-line coding, focused coding, and categorisation. Data collection and analysis were iterative, to enable continuous comparative analysis.FindingsThe core category of postintensive care syndrome experienced by families was ‘being devastated by the critical illness journey in the family’ and comprised the interactions of four categories: ‘overwhelming intensive care experience’, ‘taking responsibility for the recovery trajectory of critical illness’, ‘life devastated by the trauma of intensive care and family caregiving’, and ‘balancing and compromising’.ConclusionBased on this grounded theory approach, postintensive care syndrome experienced by families is a complex and ongoing phenomenon that arises from the recovery trajectory of a critical illness. It involves mental, physical, social and familial aspects, particularly the impact on the patient’s family.Implications for Clinical PracticeThe findings can guide critical care nurses to understand postintensive care syndrome experienced by families in providing patient or family-centred care. To improve the long-term outcomes and quality of life for families, it is necessary to assess their unique needs within the continuum of post-intensive care syndrome experienced by the family and to propose interventions to satisfy those needs.     

‘The self‐destruction force is so strong’: male survivors’ experience of suicidal thoughts following sexual violence

Suicidal thoughts are common among male sexual violence survivors. However, very few studies have focused specifically on this aspect. The purpose of this study was to explore the experience of male survivors themselves of suicidal thoughts following sexual violence within the framework of men and masculinity. The research methodology was The Vancouver School of Doing Phenomenology, and a total of 17 interviews were conducted with seven male survivors. The main findings of the study are that the source of the suicidal thoughts after sexual violence is based on an experienced strong self‐destruction force that involves almost unbearable and unexpressed suffering. The strong self‐destruction force appeared among other things in risk behaviour and negligence towards own life and health. Participants all agreed that the thought of suicide was a certain escape route, that is to be constantly trying to escape from oneself and inner suffering. Negative thoughts that were difficult to suppress developed into suicidal thoughts that developed into thinking about the best possible way to commit suicide. Shattered self‐esteem, shame and loneliness characterised the lives of participants, and they felt disgusting and worthless as human beings. Much self‐degradation was characteristic. Perceived common societal norms about male masculinity had major negative impact on participants, for example that they should not show emotions because they were men and therefore should not express emotional pain or disclose their traumas. This resulted in emotional silencing. Disclosing the violence proved extremely difficult for all participants, but they experienced a high level of positive energy following disclosure. Participants experienced lack of knowledge, understanding and appropriate support from healthcare professionals and felt that sexual violence survivors’ trauma history needed to be better explored within health care. It is important that professionals acquire knowledge and understanding of male sexual violence survivors, and their suicidal thoughts, and become able to provide trauma‐specific support.     

Family‐focused recovery: Perspectives from individuals with a mental illness

Family members often provide significant support and care to their relative who has a mental illness. Nonetheless, how family members might be part of an individual's mental health recovery journey is rarely considered. The aim of this study was to investigate how those with a mental illness define ‘family’ and the role of family (if any) in their recovery journey. A qualitative approach was used. Purposive sampling and snowballing were used to recruit and conduct semi‐structured interviews with 12 people who have been diagnosed with a severe mental illness. Participants defined family in various ways with some being very inclusive and others more selective. There was acknowledgement that family contributed to the individual's recovery in a myriad of ways, although the need for boundaries was stressed. While no participants suggested that their family might become active treatment facilitators, they did want clinicians to support them in talking to their family about their mental illness. A multifaceted approach is needed to promote family‐focused recovery practice. The needs of different family members and the needs of the family as a group should be considered concurrently alongside the individual's needs in their recovery plan. Individual and relational components of recovery should be embedded in policy and clinical practice.     

Recovering from the psychological impact of intensive care: how constructing a story helps

Background: Numerous studies have demonstrated both the risk of post‐traumatic stress as a result of intensive care unit (ICU) treatment and the efficacy of successful narrative processing for recovery from psychological trauma. Aim: This article is based on recent doctoral research exploring the impact of unanticipated life threats after admission to hospital. It examines the difficulties ICU patients have with constructing coherent narratives of their illness experience and the significance of those difficulties for psychological recovery from critical illness. Methods: The original research used a qualitative design blending discourse, narrative, and phenomenological approaches guided by hermeneutical sensitivity to the evolving language of narrative processing. Patients chosen from ICU discharge summaries showing a critical life‐threatening event after admission to hospital were interviewed soon after discharge from hospital and then again 1 year later. Unstructured interviews explored participant experience of a critical event and its aftermath. Results: This article focuses in particular on one finding from the doctoral research. Unanticipated critical illness presented some patients with difficulties in accomplishing the fundamental human task of constructing a narrative of their experience. Risk factors were observed identifying specific vulnerabilities. The extent to which difficulties were overcome impacted positively on the patient's sense of well‐being 1 year after discharge. Conclusions: In order to recover psychologically, some ICU patients need help overcoming obstacles to their ability to construct an adequately coherent narrative of their experience. Relevance to clinical practice: ICU follow‐up clinics could gain increased clarity of purpose from this narrative conceptual framework, eventually evaluating and validating benchmarks for assessing psychological recovery in relation to specified dimensions of narrative processing. Practice development informed by narrative process theory could also enhance ICU nursing communication. Since story construction is central to a person's core identity processes, person‐centred nursing would also be implicated.     

Adapting to life after burn injury-reflections on care

A burn injury is an unforeseen event that means physical and psychological trauma for the person afflicted. The trauma experienced by different individuals varies greatly, as do perceived problems during care, rehabilitation, and throughout the remainder of life. The purpose of this study was to explore burn patients' experiences of adapting to life after burn injury to acquire a deeper understanding of the most important issues for patients when providing care during and after a burn injury. A qualitative approach was applied, and interviews were conducted with 12 adult burn patients (8 men and 4 women) 6 to 12 months postburn. The interviews were analyzed using Kvales' method for structuring analysis and comprised a close reading and interpretation of the texts. Analysis focused on the personal experiences of burn patients living after burn injury and treatment. Struggling with the consequences of burn injury and how patients perceived life today after treatment are important issues for adapting to life after burn injury. New experiences of a fragile body, coping with daily life, and reflections of burn care were also prominent themes. Patients with burn injuries need adequate repeated information about the plan for their care, about the physiological changes, and more support to handle the trauma event. The patients would also like to be more involved in their care. A program of support and preparatory work to help the patient to cope with the new bodily sensations and new body image is necessary and should begin during hospital care. A multidisciplinary team approach for pain treatment needs to be prioritized. In addition, multidisciplinary follow-up after burns need to include patients with minor burns.     

Life experiences after stroke among Iranian stroke survivors

DALVANDI A., HEIKKILÄ K., MADDAH S.S.B., KHANKEH H.R. & EKMAN S.L. (2010) Life experiences after stroke among Iranian stroke survivors. International Nursing Review 57 , 247–253 Background: Stroke is a major cause of disability worldwide. It is a life‐threatening and life‐altering event, which leaves many physical and mental disabilities, thus creating major social and economic burdens. Experiencing a stroke and its aftermath can be devastating for patients and their families. In Iran, many services are not available for those who lack property; this may result in many difficulties and long‐term problems for stroke survivors and their family members who are usually the main caregivers in Iranian cultural. Despite its effect on their lives, little is known about how the survivors perceive stroke in the Iranian context, therefore, knowing more about this process may enhance problem identification and problem solving. Aim: To illuminate how stroke survivors experience and perceive life after stroke. Method: A grounded theory approach was recruited using semi‐structured interviews with 10 stroke survivors. Findings: The survivors perceived that inadequate social and financial support, lack of an educational plan, lack of access to rehabilitative services, physical and psychological problems led them to functional disturbances, poor socio‐economical situation and life disintegration. The core concept of life after stroke was functional disturbances. Conclusions: The study shows the need to support the stroke survivors in their coping process with their new situation by providing appropriate discharge plans, social and financial support, social insurances and training programmes for the stroke survivors and their families.