Illness Situation Research Articles

Complex trauma, complex reactions: Assessment and treatment.

Complex trauma occurs repeatedly and escalates over its duration. In families, it is exemplified by domestic violence and child abuse and in other situations by war, prisoner of war or refugee status, and human trafficking. Complex trauma also refers to situations such as acute/chronic illness that requires intensive medical intervention or a single traumatic event that is calamitous. Complex trauma generates complex reactions, in addition to those currently included in the DSM‐IV (American Psychiatric Association, 1994) diagnosis of posttraumatic stress disorder (PTSD). This article examines the criteria contained in the diagnostic conceptualization of complex PTSD (CPTSD). It reviews newly available assessment tools and outlines a sequenced treatment based on accumulated clinical observation and emerging empirical substantiation. Complex trauma refers to a type of trauma that occurs repeatedly and cumulatively, usually over a period of time and within specific relationships and contexts. The term came into being over the past decade as researchers found that some forms of trauma were much more pervasive and complicated than others (Herman, 1992a, 1992b). The prototype trauma for this change in understanding was child abuse. The expanded understanding now extends to all forms of domestic violence and attachment trauma occurring in the context of family and other intimate relationships. These forms of intimate/domestic abuse often occur over extended time periods during which the victim is entrapped and conditioned in a variety of ways. In the case of child abuse, the victim is psychologically and physically immature—his or her development is often seriously compromised by repetitive abuse and inadequate response at the hands of family members or others on whom he or she relies for safety and protection. The expanded understanding also extends to other types of catastrophic, deleterious, and entrapping traumatization occurring in childhood and/or adulthood, for example, ongoing armed conflict and combat, POW status, and the displacement of populations through ethnic cleansing, refugee status, and relocation and through human trafficking and prostitution. It might also result from situations of acute and chronic illness that require ongoing and intensive (and often painful) medical intervention or may even result from a single catastrophic trauma, for example, witnessing the sudden traumatic death of another individual or experiencing a brutal gang rape.

Having a parent with cancer: coping and quality of life of children during serious illness in the family.

Little research has addressed how a parent's cancer affects young children. The purpose of this study was to explore the well-being and coping of young children during a period of cancer illness in the family. An explorative design was chosen, and data were collected through qualitative in-depth interviews with children (ages, 7-12 years) and their parents. Data were analyzed and interpreted within a phenomenologic-hermeneutic frame of understanding. Four major themes emerged in the findings: illness ruling in the family, reactions over and under the surface, many efforts to manage the situation, and feeling good most of the time. This report discusses how children's reactions and their management of such a difficult life event affect their quality of life. By going "in and out" of the situation, both literally and emotionally, the children cope with the situation and maintain a balance in life. In general, the children reported "feeling good," but they put a lot of effort into it, and their quality of life appeared to be fragile. Their well-being was especially vulnerable at the time of the diagnosis and when the illness situation changed.

Understanding uncertainty and minimizing families’ anxiety at the time of transfer from intensive care

When general ward registered nurses (RN) receive patients from an intensive care unit (ICU) they report that much of their time in the initial phases revolves around meeting family needs (Farvis, 2002). Families experience anxiety when leaving the security of the close monitoring seen in ICU (Leith, 1999) and their anxiety reduces their ability to play a key role in the patient's recovery (McShane, 1991; Leske, 1992) as it can impair their decision-making (Cagan, 1988; Halm et al., 1993). By reducing a family's anxiety, they may be more able to cope with the necessary transition to a general ward and support the patient's recovery. A literature search from 1990 onwards was performed within the CINAHL, Medline and Cochrane databases using the key words: intensive care, family, General System Theory, uncertainty, anxiety and transfer. Further articles were retrieved from citation references from the Web of Science or through the reference lists of retrieved literature. Library catalogues were searched using the same key words for books and book chapters. von Bertalanffy's General System Theory provides a framework for understanding the importance of family in a critical illness situation. Critical illness permits little or no time to adapt, thus reducing the family's ability to cope with the situation. Transfer out of ICU is a significant anxiety-producing event for families. Uncertainty in illness is reported in other illness situations to reduce family's adaptation to illness events, but has not been researched with an ICU cohort of families. Seven out of the top 10 needs of ICU families are information needs, highlighting the importance of communication regarding progress and future plans. Nurses require an increased awareness that transfer anxiety exists for families and to be knowledgeable about ways to reduce its occurrence. Research is required to evaluate the efficacy of interventions to reduce anxiety for families and examine the level of uncertainty in illness in this cohort.

Continuing care of chronic illness: Evidence-based medicine and narrative-based medicine as competencies for patient-centered care

The longitudinal care of patients with chronic illnesses is one of the most central respon- sibilities of a family physician's practice. To the patient-physician relationship, the patient brings his needs - arising from his prior life experiences, current life situation, resources, and explanatory models of illness. The physician brings expertise and evidence about the best care for the disease. The bridge connecting these two worlds is narrative-based medicine (NBM). An essential competency for the best care of patients with chronic illness is an amalgamation of evidence-based medicine (EBM) and NBM, based upon an underlying infrastructure of behavioral science. Although such knowledge, skills, and attitudes are essential, the very best longitudinal care develops over time and requires careful obser- vation by physicians. © 2003 Blackwell Publishing Asia and Wonca

Strength of motherhood: nonrecurrent breast cancer as experienced by mothers with dependent children.

The experience of breast cancer in mothers of dependent children and the strategies these women use to handle their situation of illness in relation to the children was the focus of this study. Ten women with nonrecurrent breast cancer were interviewed using phenomenology as a theoretical framework. The findings reveal that the women needed to balance themselves from being needed and perhaps not existing, balancing between demands, a will to be strong and allowing herself to be sick, and balancing between telling the truth and protecting the children from the truth. The women had strategies to help them in this struggle. To carry on as usual and continue everyday life became very important to them. To do this they had to combine their own strength with support from others and try to turn things into a positive perspective. The essential meaning of living with breast cancer and having dependent children implied using the strength of motherhood to balance conflicting forces and thereby continuing everyday life. The clinical implications include awareness and support to maintain everyday routines and generate strength.

Patient School as a Way of Creating Meaning in a Contested Illness: The Case of CFS

Creating meaning in a situation of contested illness like Chronic Fatigue Syndrome (CFS) is an interactive process. As an example of how meaning is created, a CFS patient school organized by a hospital clinic in Sweden is discussed. This school can be seen as both a school and a medically oriented activity. The presence of different frameworks provides an opportunity to use different perspectives to understand CFS. It makes it possible for the participating men and women to regard the illness both from the outside as a social object, from the inside through personal experiences and to put the diagnosis and suffering in a larger ‘sickness’ perspective. Consequently, a number of different interpretations are brought up and used to create meaning in a situation of illness. The patients/students are thus learning discursively to manage the illness at the same time as they examine different ways to interpret their experiences through this discursive activity.

Irony and Illness: Recognition and Refusal

Proponents of irony can hardly propose a definite theory or even a definitive introduction to their subject. Here we intend merely to review the impetus for our volume and the suggestions we gave our bemused contributors.

A qualitative study of coping in the early stage of acute traumatic hand injury.

Twenty patients with acute traumatic hand injury were interviewed 8-20 days after the day of the accident. The aim of the study was to identify coping strategies, defined as thoughts or actions used by the hand-injured patients to manage stress factors and resulting emotions in the early stage. Stress factors were reported in an earlier study. The analyses of the interviews followed the first steps in the analytical process described in a modified model of grounded theory. Eleven different coping strategies were identified in the interviews. By "comparing with something worse", "positive thinking", "relying on personal capacity", "distancing" and "distracting attention" the patients tried to play down the seriousness of the problem or situation. Other coping strategies used by the hand-injured were "accepting the situation", "seeking social support", "maintaining control", "solving practical problems by oneself", "pain-relieving actions" and "active processing of the trauma experience." The findings of the study show how important it is to identify the patient's own way of coping with a stressful illness situation in order to give adequate psychosocial support.

Chapter 5. Illness and social situation

Chapter 5. Illness and social situation

A Concept Analysis of Uncertainty in Illness

To examine the concept of uncertainty in illness and to propose an alternate model of uncertainty in the illness experience. Following a review of the literature, Morse's description of concept analysis by critically appraising the literature was used as a guideline in examining the concept of uncertainty. Characteristics of the illness situation--ambiguity, vagueness, unpredictability, unfamiliarity, inconsistency, and lack of information--underlie the process of uncertainty. Three attributes of the concept of uncertainty were identified as probability, temporality, and perception. Loss of personal control is often erroneously equated with uncertainty. Uncertainty is a multidimensional concept that in its purest form is a neutral cognitive state and should not be mistaken for its emotional outcomes. To clarify the concept of uncertainty, further research is needed to determine the relationship of uncertainty to loss of control and psychosocial outcomes.

Refusing to be ill: a longitudinal study of patients' experiences of asthma/allergy

Purpose : The purpose of this study was to search for a deeper understanding of the ways patients with asthma/allergy experience their illness situation. Method : Thirty patients with a history of airway symptoms on allergen exposure and a positive skin prick test were included in the study. They took part in open-ended interviews in their homes twice at an interval of eight years, according to the phenomenographic approach. Results : Fourteen different categories of experience were identified: 'knowing for oneself', 'body related', 'environment related', 'psychosomatic', 'magic', 'fatalism', 'compliance with medication', 'alternative medicine', 'health care', 'provocation', 'avoidance', 'normalization', 'normification' and 'pursuing life'. The analysis also showed that these categories, to varying degrees, were an expression of a desire to retain an ordinary healthy identity and its value. The longitudinal results showed that with time the patients distanced themselves from the medical perspective and found their own ways of thinking and acting in relation to their ill health, which is seen as strengthening for the identity. Conclusions : The different, individual ways patients with asthma/allergy developed in relation to the illness situation have a preserving effect on the identity, which ought to be considered in patient education and rehabilitation.

Receiving a diagnosis of lung cancer: patients' interpretations, perceptions and perspectives.

Lung cancer has a higher incidence than any other type of cancer and more than 80% of sufferers die within a year of diagnosis. An important aspect of caring for cancer patients is the breaking of bad news, something that most doctors admit to having difficulty with. Only a few publications on this issue adopt the patients' perspective. This study aimed to document patients' views on delivery of lung cancer diagnoses, their attitudes to methods used and ideas for improvement. Patients were selected from medical, surgical and general practitioner clinics to provide insight into patients' perceptions of care in different environments. Those who gave informed consent completed a taped semi-structured interview. Transcripts were analysed qualitatively using a phenomenological approach. Recruitment was stopped when saturation was reached: no new themes were being identified. A summary of results was sent to patients, whenever possible, for their comment. An independent researcher coded four transcripts to establish the degree of inter-rater reliability. Thirteen patients were recruited. There were five key areas: communication (including the use of words such as 'tumour' and 'growth'), family/community issues, reaction to diagnosis, views on treatment and prognosis (all of which were very variable), and suggested improvements (e.g. a clearer explanation of the experience of bronchoscopy in the patient information leaflet, PIL). Inter-rater reliability was good. The PIL is being revised. Factors including family situation and personal experience of illness vary greatly and yet they influence patients' reactions to receiving a diagnosis of lung cancer, their interpretation of this and their attitudes to the illness and treatment. These findings underline the need to continue to develop lung cancer services that can provide quality care tailored to each patient.

Developing interventions for chronically ill patients: Is coping a helpful concept?

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.

PRECARIOUS ORDERING: TOWARD A FORMAL THEORY OF WOMEN'S CARING

Given the current societal and political trends toward increasing demands on women to provide care, a conceptualization of caring that captures the common processes of diverse women's caring experiences, and makes the consequences of caring for women's health visible, is critical for the development of a health and social policy that is responsive to women. The findings of this feminist grounded theory study go beyond the current theoretical understandings of women's caring, framed as either burden or fulfilment. The complex strategies women use to manage the dissonance created by competing and changing caring demands are revealed as a process I have named precarious ordering. This middle range theory demonstrates the power and resilience in women's management through the interdependent processes of setting boundaries, negotiating, and repatterning care. In addition, the method of theoretical sampling used in this study is explicated to move toward a formal theory applicable to diverse women's caring in a wide range of health, illness, and developmental situations.

A Model for Supporting the Patient's Coping with Chronic Illness

The focus of this literature study is the concept of coping from the perspective of nursing. For the analysis of Benner and Wrubel's model Fawcett's analytical structure was used. The paper describes how the nurse can use the model as a basis for guiding the patient towards successful coping with regard to well-being. The nurse interprets the experience of stress and assesses the coping requirements and the available coping resources on the basis of three questions: Coping with what? To what end? With what resources? An urgent complementary question should be how the patient copes with the illness-related stress. The nurse contributes to improving the well-being of the patient by understanding his or her perception of the illness situation and by supporting and reinforcing coping resources, mobilising hope and fostering a sense of meaning and coherence. All this is of particular importance when the illness is chronic. One conclusion deriving from the analysis is that the model needs to be completed with a clearer family perspective; another is that students and newly-qualified nurses need guidance and training in the interpretation of paradigm cases. Furthermore there is need for inductive, phenomenological research directed towards a deepening of Benner and Wrubel's model on the basis of patients' own experiences of stress, coping and caring.

Childhood Chronic Illness: A Comparison of Mothers’ and Fathers’ Experiences

Despite a growing emphasis on gender differences in parental response to childhood illness and disability, relatively few studies have compared how mothers and fathers adapt to having an ill child. This article explores how mothers and fathers of a child with a chronic illness viewed their experience and its impact on family life. Within families, parents typically had a shared view of the experience and its impact on their life as reflected in both the qualitative interview data and quantitative measures of family and individual functioning. In the minority of cases where parents held discrepant views, it was the mother who emphasized the negative aspects of the chronic illness situation. The results of this analysis support the growing emphasis among family researchers on exploring family strengths in the face of illness challenges and collecting data from multiple family members.

Religious/spiritual concerns in caring for the cancer patient.

Often, medical care givers fail to fully attend to religious and spiritual concerns of patients and instead assign responsibility elsewhere. It is frequently thought of as somebody else’s job, such as that of the chaplain. Occasionally, a caregiver may take the initiative and inquire whether the patient would like to see one of the hospital’s pastoral care team or some other religious minister of the patient’s choice. But, given the secular and business-like milieu of medicine today, the religious and spiritual concerns of patients and their caregivers are often neglected as caregivers and patients focus on high technology diagnosis and treatment. Yet both patients and their caregivers bring the religious and moral convictions and commitments that have shaped their lives and actions to each clinical encounter.1 In a situation of serious illness or injury, patients confront a crisis of meaning; they become aware of actual or anticipated loss of function, and with that, intimations of their mortality. It is normal, then, that they begin to reflect on what this illness or injury means to them. They find they have needs for some form of sharing their reflections and for supporting these reflections. Patients will often look to the medical caregiver to satisfy these needs.

Vitamin and mineral supplementation

SummaryIt is the position of The British Dietetic Association that a good quality balanced diet will meet most people's nutritional needs. When people choose to take vitamin/mineral supplements they are advised to select a product formulated in line with dietary reference values to prevent the risk of overdosing, which can occur when high single doses or many supplements are taken.Vitamin and mineral supplements may be recommended for at‐risk groups and in particular circumstances, provided that benefits have been clearly established through scientific evidence. The use of supplements for very specific medical conditions and in situations of acute illness requires medical supervision.State Registered Dietitians (SRDs) have the expertise to provide appropriate advice, support and motivation in this area.

The Conscious Death of a Two-Year-Old: Beautiful and Unbearable

This article draws on the personal experience by the author of an infant's illness and death to make three points: 1) children, however young, should be recognized as conscious beings, able to handle their dying process; 2) close relatives and medical staff may not be able to face the impending death of a patient; professionals may need to be brought in to help them come to terms with a situation of terminal illness; 3) by keeping illness and death away from its center, society dehumanizes these very human processes.

Shamanism, narratives and the structuring of illness

Abstract: This work examines how the narrative tradition of the Siona Indians regiments the illness experience into a structure of relevance and consequentiality as well as how it provides a model for the generation of persona/narratives. A text that can be considered a prototypical model of an illness narrative is examined. This narrative, as others of its kind, furnishes a model for interpretation and action in ongoing illness situations that defy routine and commonly known therapies. This is done in two ways. One is through narrative structure that establishes a set of certain questions and expectations as to the consequentiality of events: how they evolve, the nature of motives behind misfortunes, and strategies for resolution. The second is through provision of codes or signs that aid in the interpretation of hidden events. In this sense, the illness narratives are not predictive, but indicate what is relevant for interpreting illness and organizing a plan of action.