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Chronic Sorrow in Multiple Sclerosis
Abstract
Multiple sclerosis, one of the most common chronic disabilities among young adults, may potentiate the occurrence of chronic sorrow. Chronic sorrow differs from acute grief because it is permanent, periodic, and progressive in nature; it may be a normal component of chronic illness and disability. This study describes one woman's experience with multiple sclerosis, her chronic sorrow about the trajectory of her disability, her progressive loss of bodily function, and the stigma of chronic illness. It also reports some of the feelings experienced by her husband, the primary caregiver.
This descriptive, qualitative study examines manifestations of the Chronic Illness and Recovery models among clinical transplant coordinators. Data collected through focused group interviews revealed that the Chronic Illness model fosters patient dependency, education about the illness itself, a perception that transplantation does not change the chronic nature of illness, a view of patients as socioeconomically disadvantaged and dependent on the transplant center, and the use of reactive approaches to care. In contrast, the Recovery model encourages patient independence, limits coordinators' protective feelings toward patients, provides education for life tasks, perceives patients as socioeconomically advantaged people capable of managing their own lives, and conducts patient care in a proactive manner.
Purpose
The purpose of this study was to explore how adaptive patterns of religiousness/spirituality and hope predict adult life satisfaction in adults, even if they had childhood loss experiences.
Design and Methods
Using a cross-sectional survey design with132 adult participants (mean age 33.8 ± 15.2, 82% female, 78% Caucasian) we estimated two hierarchical regression models to examine how dimensions of religiousness/spirituality (Brief Multidimensional Measure of Religiousness/Spirituality) and hope (Herth Hope Index) predicted adult life satisfaction (Satisfaction with Life Scale) after controlling for effects of adverse childhood experiences (Adverse Childhood Experiences Study Questionnaire) or chronic sorrow from childhood loss (Kendall Chronic Sorrow Instrument).
Results
When effects of adverse childhood experiences (ACE) were controlled, higher levels of hope (β = .416, p < .001) and forgiveness (β = .273, p = .023) and lower levels of religious/spiritual values/beliefs (β = −.298, p = .014) predicted higher levels of adult life satisfaction. ACE remained a significant predictor of adult life satisfaction in the final model. When controlling for effects of chronic sorrow, higher life satisfaction was predicted only by forgiveness (β = .379, p = .003), values/beliefs (β = −.354, p = .007), and hope (β = .357, p < .001), with chronic sorrow not a significant predictor of adult life satisfaction in the final model.
Conclusion
Greater life satisfaction for adult survivors of childhood loss experiences could be promoted by interventions to enhance hope and foster forgiveness. These adult survivors may also need support as they engage with religious/spiritual struggle to reconcile their values and beliefs with childhood loss.
This study investigated the occurrence of chronic sorrow among individuals who experienced the death of a loved one. In-depth interviews were conducted with fourteen parents who had experienced the death of a child, ten people who had suffered the death of their spouses, and ten individuals who had had a family member die. Interviews were transcribed and data were sorted into categories, with recurring themes identified. Thirty-three (97 percent) of those interviewed evidenced chronic sorrow. Confronting disparity with social norms and situations that brought memories to mind most frequently triggered recurrence of grief-related feelings. Subjects used action-oriented, cognitive, and interpersonal coping strategies to deal with these episodes of grief. These findings bring into question the expectation inherent in traditional grief theories that emotional closure is a necessary outcome of the grieving process.
Chronic sorrow is the presence of pervasive grief-related feelings that have been found to occur periodically throughout the lives of individuals with chronic health conditions, their family caregivers, and the bereaved. These feelings emerge in response to an ongoing disparity that results from the loss of the anticipated “normal” lifestyle of these persons. Circumstances and situations shown to trigger chronic sorrow in a variety of these populations are defined. Similarities and differences of the trigger events among groups and the implications for family nursing practice are discussed. Support that has been identified as helpful when life circumstances evoke chronic sorrow is described.
This study investigated the incidence of chronic sorrow in parents of chronically mentally ill children. A convenience sample of 10 parents (four couples and two mothers) of adult children diagnosed with either schizophrenia or bipolar disorders were interviewed using the Burke/NCRCS Chronic Sorrow questionnaire (Caregiver Version). Findings showed that 8 out of 10 parents experienced chronic sorrow. These grief-related feelings were most often triggered by the unending caregiving responsibilities parents described. Those who evidenced chronic sorrow indicated that healthcare professionals could assist them by providing information about their child's illness and by involving them in the treatment process.
The purpose of this research was to uncover a structure of the lived experience of joy-sorrow using the Parse research method. Eleven women over 65 years of age volunteered to participate in the study by engaging in audio- and videotaped dialogues with the researcher about the phenomenon. The structure of the lived experience of joy-sorrow was found to be pleasure amid adversity emerging in the cherished contentment of benevolent engagements. Recommendations for further research and practice are specified.
This article, the second in a series focusing on aspects of rehabilitation, considers the potential nursing role in relation to multiple sclerosis (MS). It begins with a brief description of the experience of MS as recounted by the individuals affected, which is then contrasted with current interventions which focus primarily on physical aspects of care. A number of areas of potential improvement are outlined, together with suggestions for a more comprehensive nursing role.
To introduce a middle-range nursing theory of chronic sorrow that presents this sorrow as a normal response to ongoing disparity due to loss. Chronic sorrow is the periodic recurrence of permanent, pervasive sadness or other grief related feelings associated with a significant loss. The theory provides a framework for understanding and working with people following a single or ongoing loss.
The model of chronic sorrow includes antecedents, trigger events, and internal and external management methods.
Theory is useful for analyzing individual responses of people experiencing ongoing disparity due to chronic illness, caregiving responsibilities, loss of the "perfect" child, or bereavement.
The theory was developed using concept analysis, critical review of research, and validation in 10 qualitative studies of various loss situations.
Chronic sorrow has been shown to explain the experience of people across the lifespan who encounter ongoing disparity because of significant loss. Nurses need to view chronic sorrow as a normal response to loss and, when it is triggered, provide support by fostering positive coping strategies and assuming roles that increase comfort.
Chronic sorrow often affects not only an individual who has a chronic illness or disability but the family members as well. This is the story of how chronic sorrow affected the life of a man diagnosed with prostate cancer and the family members who lived through it with him. It is told in the first person by his daughter not only as a tribute to her father, but also as a prospective learning experience for anyone involved with an individual moving through a chronic or terminal illness or disability. It integrates theory, research, and personal experience in an effort to understand this common human response to a chronic or terminal illness.
This study compares the responses of health professionals to multiple sclerosis (MS) and motor neurone disease (MND) in order to determine similarities and variations in responses to the two disorders and the issues critical to caring for patients with these conditions. Health professionals were more negative about MND compared with MS in terms of the amount they felt able to offer patients, their confidence in managing patients and their ability to convey hope. For a number of issues concerning the management of patients, the level of difficulty experienced by health professionals was similar for both MS and MND. These were resource issues, the health professionals' ability to remain positive in the face of progressive disability, interdisciplinary team problems and difficulties regarding patient care. The main concern of health professionals, for both conditions, was the effect of progressive disability on the patient. For MND, management issues which health professionals found comparatively more difficult than for MS were patients' short prognosis and impending death, communication problems and progressive disability. Issues which were comparatively more difficult for MS than MND were changes in patients' affect, cognition and personality, problems with planning care because of the disorder's unpredictable course, problems with diagnosis such as making and disclosing the diagnosis, and the tendency for patients to be difficult or demanding. Some notable differences in responses between health professionals in different health care settings were found. The findings have implications for changing health professionals' conceptualization of 'hope', developing ways of improving communication between health professionals in different health care settings so as to enable them to learn from each other's expertise and experiences and redressing gaps in service provision, especially for young people with MS.
To examine the utility, reliability and validity of a new scale, The Loss Inventory (LI) for measuring symptoms unique to grief following disablement.
Prospective survey study in which two self-report measures, the LI and Zung Self-Rating Depression Scale, were administered to 103 hospitalized rehabilitation patients. Correlational analyses, t tests, t score conversions of raw data, and analysis of variance used to determine reliability (internal consistency) of the LI and compare means of scores across several variables.
Cronbach's Alpha=0.90 for the LI. The Zung and the LI correlated 0.59 but study subjects were significantly (p<0.001) more likely to score higher on the LI than on the Zung. Certain LI items were significantly more frequently endorsed by depressed patients. Significant gender and ethnic differences were found.
Rehabilitation patients sampled in this study were no more likely to be depressed than most people. Grief symptoms reported following functional losses are similar to those reported by persons who have experienced the death of someone close. The Loss Inventory reliably measures these grief symptoms. Gender and ethnicity affect the manner in which grief symptoms are reported. The LI may improve mental health clinicians' diagnostic accuracy in rehabilitation and medical settings.
The aims of the present study were to describe losses narrated by persons afflicted with severe chronic physical illness and to identify the concomitant occurrence of chronic sorrow.
Reactions connected with repeated losses are referred to in the literature as chronic sorrow, which has recently been described in conjunction with chronic illness.
A qualitative study with an abductive approach of analysis, including both inductive and deductive interpretations.
The study is based on 30 persons of working age with average disease duration of 18 years. The average age was 51 years. All of the persons had personal assistance for at least three months because of considerable need for help in daily life due to physical disability. Each person was interviewed twice. There was also an independent assessment of the deductive results concerning chronic sorrow.
The inductive findings show that all persons had experienced repeated physical, emotional and social losses. Most common were 'Loss of bodily function', 'Loss of relationship', 'Loss of autonomous life' and 'Loss of the life imagined'. 'Loss of identity' included the loss of human worth, dignity and a changed self-image. In addition, the deductive findings suggest that chronic sorrow exists in the study population. Sixteen of 30 participating subjects were assessed by both assessors to be in a state of chronic sorrow and there was an especially high agreement with respect to one criterion of chronic sorrow 'Loss experience, ongoing or single event' (28 of 30 subjects).
This study shows that persons with severe chronic illness often experience recurring losses. These experiences are consistent with the phenomenon of chronic sorrow.
Knowledge of the existence of chronic sorrow in persons with chronic illness will enable nurses to support these persons in a more sensitive and appropriate way.
The aim of this study was to explore the presence and meaning of chronic sorrow and the presence of depression in a fairly large group of persons with multiple sclerosis (MS).
MS is a chronic and progressive neurological disease with a variety of symptoms. The patients have to live with losses of different kinds. A few earlier studies have used the concept of chronic sorrow to illustrate the emotional situation of such patients.
Sixty-one patients were interviewed about the occurrence of chronic sorrow and, thereafter, screened for depression. Thirty-eight (62%) of them fulfilled the criteria for chronic sorrow. The interviews were analysed with latent content analysis.
Seven themes describe the losses that caused sorrow: loss of hope, loss of control over the body, loss of integrity and dignity, loss of a healthy identity, loss of faith that life is just, loss of social relations and loss of freedom. The sorrow was constantly present or periodically overwhelming. Only four of the 38 patients with chronic sorrow had symptoms of being mildly depressed.
Chronic sorrow meant loss of hope, of control over the body, of integrity and of identity. The concept of chronic sorrow complements that of depression in providing important new knowledge relevant to understanding the consequences MS can have for the individual.
Knowledge of the meaning of chronic sorrow can contribute to the nurse's ability to give psychological support and promote a sense of hope and control in the MS patient.
The goals of this study were to describe the ways in which patients with multiple sclerosis (MS) manage chronic sorrow and to apply this information to the theoretical model of chronic sorrow. This descriptive study involved 38 participants with MS who were experiencing chronic sorrow. Using the theoretical model of chronic sorrow, we applied content analysis to participants' accounts of how they attempted to manage this sorrow. The findings showed that discomfort resulted from ineffective management of chronic sorrow, reflecting the vulnerability these patients experience and the lack of understanding of their needs and appropriate support from family, friends, and healthcare personnel. In some cases, however, the losses and emotional distress caused by MS were managed effectively, which led to increased comfort through personal growth and a greater appreciation of life, greater confidence, and hope for the future. The theoretical model was valuable in helping to describe participants' patterns of managing chronic sorrow. Healthcare personnel should acknowledge chronic sorrow as one aspect of psychological distress in MS. Knowledge of patients' experiences of chronic sorrow should be included in the education for neuroscience nurses. Furthermore, it is necessary to develop support interventions for patients with chronic sorrow and their families.
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