Spiritual Inquiry and Well-Being in Life-Limiting Illness

ABSTRACT

Introduction: End of life, as a developmental phase, is accompanied by inner resources as well as losses. Spirituality is a potential inner resource for integrating illness that often occurs during this time. Despite the increase in spirituality research, how spiritual perspectives are used in life-limiting illness remains under-investigated. Better knowledge about this process may be useful for health care providers, family caregivers and patients themselves to enhance well-being at end of life. This study describes the process of how patients and family care-givers use their spiritual resources to facilitate well-being at the end of life.

Method: A qualitative study was designed, based upon the grounded theory method, that entails theoretical sampling of concepts (not sampling of people as in quantitative designs), and the analytic technique of constant comparison of the data until conceptual categories are saturated with supporting data and a theory can be identified. The sample consisted of 12 respondents: 6 dyads of elderly patients with a life-limiting illness and family caregivers. Interviews occurred over a 2-year period.

Results: Data analysis generated a theory about a process called “transcending life-limiting illness,” which derived from two related themes: spiritual inquiry and end-of-life dimensions.

Conclusion: The results expand existing knowledge about how people, either as patients or as family caregivers of persons facing end of life, live with life-limiting illness. The process of transcending life-limiting illness goes beyond merely coping to tap resources for well-being. This resource is expressed through an ongoing dialectic process of spiritual inquiry about life and death as supported by six critical life dimensions.     

The Pain of Dying

SUMMARY

Dying can be a painful and difficult business. Fears, hopes, losses, questions, and uncertainty result in a form of pain that lies beyond the therapeutic reach of science and pharmacology. Efforts to preserve and prolong life or to make things better can sometimes result in this pain being overlooked or remaining unheard. To search the deepest part of oneself is the journey that beckons us all as we are dying. Within this space resides the source of our own suffering but also the seeds for healing. This exploration has a momentum of its own but requires conditions not often found within the biomedical paradigm. If this model of care remains the only source of hope for those with a life-threatening illness, ‘the pain of dying’ may not be addressed.     

Rehabilitative Beit Midrash as a means for advancing the community integration of Ultra Orthodox Jewish persons with severe mental illness

ABSTRACT

Religious Jews with severe mental illness often encounter barriers to involvement in religious activities in their community affecting their ability to become integrated into their community. Therefore, a study was conducted in Israel examining the contribution to community integration through a programme providing religious persons with mental illness an opportunity to participate in religious studies. An A-B research design was implemented among 42 Ultra-Orthodox Jewish persons with severe mental illness utilising a culturally-oriented structured instrument. The study showed that the opportunity for involvement in religious studies could advance the participants’ sense of social interaction in their community as well as their sense of psychological integration with other religious people. It also strengthened their confidence in their ability to further get involved in religious studies in the community. Rehabilitation services providing persons with severe mental illness an opportunity for involvement in religious studies can act as a springboard for advancing their community integration.     

The Relationships Among Differing Loss Experiences,Adjustment, Beliefs,and Coping

Abstract

Losses are often equated for conceptual purposes, and it is often assumed that different types of losses result in similar grief reactions and exert similar effects on cognitive structures and coping patterns. This article examines the expectancies, beliefs, coping patterns, and psychological adjustment associated with loss due to death, parental. divorce, or illness and disability in a college student population. Loss groups did not differ from each other or from a no-loss group on cognitive variables, coping, or psychological adjustment. In instances in which associations between the cognitive measures and either coping or adjustment were indicated, the typical pattern was for loss groups to differ from the no-loss condition but not from each other.     

The Paradoxes of Humor and the Burdens of Despair

SUMMARY

People today often express considerable despair about old age and the aging process. Older adults who experience frequent losses of connections with important persons can feel considerable despair in old age. Nevertheless, many older people retain hope in the face of situations that elicit despair and demonstrate what gerontologists call the “paradox of well being” in later life. Often, their hope is expressed in humor. This paper traces the connections among humor, hope, and religious faith in older adults. It argues that even persons who suffer from dementia can continue to express what Viktor Frankl called the “defiant power of the human spirit” through their humor.     

Shattered dreams,resiliency, and hope: “restorying” after loss

Abstract

Experiences of shattered dreams can cause some to lose hope and the capacity to dream new dreams and create new stories. Unless family professionals pay attention to and aid persons in grieving lost dreams, children, adults, and families may have difficulty turning the corner to hope and healing after loss. The connections among attention to losses, especially shattered dreams, the promotion of resiliency, story telling, and hope are addressed in this article.     

Trajectories of self-efficacy in persons with chronic illness: An explorative longitudinal study

Background: Self-efficacy is important for changing health behaviour in persons with chronic illness. Longer term trajectories have not been previously explored.

Objective: This study’s objective was to explore the trajectories of self-efficacy in two different groups with chronic illnesses attending a patient education course.

Design: The study design was a longitudinal, comparative cohort study with five time points during a one-year follow-up, using repeated measures analysis of variance.

Setting and participants: Persons with morbid obesity (n = 55) and persons with chronic obstructive pulmonary disease (COPD; n = 56) were recruited at the start of patient education courses in Norway and followed-up four times the following year.

Main outcome measure: The General Self-Efficacy Scale was the main outcome.

Results: Obese persons showed a linear pattern of increasing self-efficacy during the follow-up period, whereas persons with COPD had an initial increase followed by a decrease in self-efficacy. Having paid work was associated with a more positive self-efficacy trajectory.

Conclusion: The results provide support for the currently employed patient education course for morbidly obese persons. In contrast, persons with COPD may need more extensive and/or more frequent support in order to increase and maintain self-efficacy across time.     

Do Patients With Psychosis Experience Loss and Grief As a Result of Their Illness?

BACKGROUND: Depression and suicidality are frequently reported in patients with psychosis and schizophrenia, but the grief process that may be associated with this illness has not been systematically studied. In this study, we examined whether patients diagnosed with psychosis identify, grieve, and mourn losses engendered by the illness. METHOD: 24 patients diagnosed with psychosis in the past five years were surveyed to indicate whether their illness led to losses, and to describe their responses to the losses. Psychosis-related perceived losses were surveyed using three subscales of a loss and grief questionnaire (loss of self, self-care, and roles). Their relationship with beliefs about the illness, symptomatology, coping style, and self-efficacy and insight was studied. RESULTS: 23 (96%) patients named specific losses, and 16 patients (67%) reported feelings associated with grief and mourning. More than half reported loss of self-esteem at the onset of illness and only half saw themselves as having improved in the past month. Patients reported more loss within the past month than at the onset of illness. In the past month, patients with an intact sense of self experienced greater self-efficacy (r = .568, p < .004) while those with loss of self reported feelings of shame (r = ?.582, p < .003). Only patients with insight associated the onset of illness with loss. In the past month, most patients saw themselves as experiencing loss. DISCUSSION: The study results suggest that at some distance from diagnosis, patients still experience themselves as having much loss due to their illness. These unresolved feelings may indicate complicated mourning. Insight appears to be associated with the ability to look back at the onset of the illness and recognize that it engendered losses. Further study of the process of and barriers to grief and mourning is recommended. In clinical practice, the assessment of grief as a part of post-psychotic recovery could lead to providing more appropriate treatment and lead to a positive outcome.     

The influence of seriousness and contagiousness of disease on emotional reactions to ill persons

Abstract

Extends research on illness cognition by arguing that two major dimensions of illness cognition - seriousness and contagiousness of disease - are responsible for different emotional responses to ill persons, and that the activation of these dimensions is dependent on type of contact with these persons. Using a vignet methodology, nursing students (N = 333) were asked to imagine having different types of contact with patients with diseases differing in seriousness and contagiousness. When participants imagined personal contact with the patient, their anxiety responses and self-efficacy expectations were primarily determined by seriousness of disease. In contrast, when they anticipated close physical contact with the patient, subjects' anxiety reactions and self-efficacy expectations were primarily influenced by contagiousness of disease. Seriousness of disease appeared to be a major determinant of feelings of pity, poweriessness, sadness, and motivation to psychologically support the patient. Theoretical and practical implications are discussed.     

Narrative, identity and mental health: How men with serious mental illness re-story their lives through sport and exercise

ObjectivesIt has been suggested that mental illness threatens identity and sense of self when one's personal story is displaced by dominant illness narratives focussing on deficit and dysfunction. One role of therapy, therefore, is to allow individuals to re-story their life in a more positive way which facilitates the reconstruction of a meaningful identity and sense of self. This research explores the ways in which involvement in sport and exercise may play a part in this process.DesignQualitative analysis of narrative.MethodWe used an interpretive approach which included semi-structured interviews and participant observation with 11 men with serious mental illness to gather stories of participants’ sport and exercise experiences. We conducted an analysis of narrative to explore the more general narrative types which were evident in participants’ accounts.FindingsWe identified three narrative types underlying participants’ talk about sport and exercise: (a) an action narrative about “going places and doing stuff”; (b) an achievement narrative about accomplishment through effort, skill or courage; (c) a relationship narrative of shared experiences to talk about combined with opportunities to talk about those experiences. We note that these narrative types differ significantly from—and may be considered alternatives to—dominant illness narratives.ConclusionThis study provides an alternative perspective on how sport and exercise can help men with serious mental illness by providing the narrative resources which enabled participants to re-story aspects of their lives through creating and sharing personal stories through which they rebuilt or maintained a positive sense of self and identity.     

Authentic Humor as an Expression of Spiritual Maturity

SUMMARY

Erikson's understanding of ego integrity and Fowler's depiction of conjunctive faith provide theoretical insights into the holistic nature of spiritual maturity. In order to ground the theory in the actual experience of aging persons, this paper demonstrates, how authentic humor represents an expression of spiritual maturity. Authentic humor can articulate the trust, hope and the faith of elders who maintain a sense of meaning and wholeness despite the changes, losses and suffering which often accompany the aging process. Persons who possess the resource of authentic humor experience the paradoxicalities of aging without yielding to despair.     

Pastoral Support for Late-Life Sexuality

SUMMARY

As more persons live longer and enjoy relatively good physical health, new ethical questions arise. One set of questions regards the continuation of sexual life among older persons, especially among older unmarried persons. Women live many years longer than their spouses and often were of a younger age than the spouses. The Judeo-Christian tradition affirms the vitality of sex as a basic part of God's gift of physical creation. A large majority of older people view sexual expression as important and many see it as crucial to a good relationship with a partner. These issues are raised for the awareness of pastoral counselors to understand and be responsive to the varied sexual alternatives m the later years m order to offer practical help to older persons.     

Relationship infidelity: A loss perspective

Abstract

A particularly poignant type of loss may be experienced by persons involved in intimate relationships in which a partner is sexually or emotionally unfaithful. As a means of exploring women's and men's perceptions about and personal experiences of unfaithfulness, approximately 140 participants completed a lengthy questionnaire relevant to close relationships. As expected, participants perceived selected gender differences in reasons for and reactions to a partner's infidelity. Based on personal reports about relationship infidelities, it appears that extrarelationship involvement is a complex issue that may result in substantial losses for relationship partners.     

Community,Affect, and Family Relations: A Cross-Cultural Study of Spiritual Resiliency in Eight Old Women

ABSTRACT

Paying attention to emotionally resilient persons is long overdue, particularly resilient old persons. Because seniors frequently cite religious faith as a primary source of strength during difficult losses and transitions, we asked how old women might be empowered by their spirituality to transcend significant losses and traumatic family events. Using triangulated methods, a feminist perspective and symbolic interactionism, we conducted focus groups and eight in-depth interviews with women over 65 in the United States and Germany. Themes of community, affect, and relationality occurred repeatedly in the narratives, revealing both unique and universal aspects of the women's spiritualities and confirming the centrality of religion as a neglected factor in family studies research.     

Pathophobia,Vices, and Illness

ABSTRACT

I introduce the concept of pathophobia to capture the range of morally objectionable forms of treatment to which somatically ill persons are subjected. After distinguishing this concept from sanism and ableism, I argue that the moral wrongs of pathophobia are best analysed using a framework of vice ethics. To that end I describe five clusters of pathophobic vices and failings, illustrating each with examples from three influential illness narratives.     

Participatory Action Research

Abstract

Traditionally, mental health research has been conducted exclusively by professionals with little input and participation from individuals with mental illness themselves. Participatory action research (PAR) provides a more dynamic method of research, giving individuals the opportunity to become activists and advocates by influencing the direction of mental health research. This paper outlines important differences between PAR methodology and traditional research, with an emphasis on the differing roles of persons with mental illness in the two models. PAR is consistent with the recovery movement in several ways: both approaches value self-definition, empowerment, and experiential knowledge. As an example, this paper describes one project that incorporates principles of the participatory action research paradigm.     

La photo-expression : un outil pour accompagner le patient en éducation thérapeutique et pour évaluer son évolution

IntroductionIn therapeutic patient education (TPE), photoexpression is often used by psychologists in order to work on patients’ perceptions and experiences, especially in group workshops.AimThe aim of this study was to explore diabetic patients’ discourse during two photoexpression group workshops at the beginning and the end of a TPE program.MethodSeventeen patients took part in this study. A lexicometric analysis was performed on their discourse during the two group workshops (Alceste® software).ResultsFor the first workshop, the analysis yielded two classes: the place of diabete in daily life as well as psychic and social functioning. For the second workshop, the analysis also yielded two classes: self-management and adjustement, as well as program experience and return back home.ConclusionThe results show an increase in adaptation skills and particularly in self-efficacy, motivation, positive emotions, perhaps illness acceptance. Photoexpression shows to be a very interesting tool in TPE to accompagny patients but also evaluate their discourse evolution during a TPE program.     

Illness perceptions and self-care behaviours in the first years of living with type 2 diabetes; does the presence of complications matter?

Objective: To assess illness perceptions, self-care behaviours and their relationship in recently diagnosed type 2 diabetes mellitus (T2DM) patients with and without diabetes-related complications.

Design: Cross-sectional survey among 192 recently diagnosed T2DM patients of whom 23% reported the presence of diabetes-related complications. Illness perceptions and self-care were assessed by the Revised Illness Perception Questionnaire (IPQ-R) and the revised Summary of Diabetes Self-Care Activities (SDSCA) measure.

Results: Generally, participating patients perceived T2DM as a chronic, but relatively controllable condition with minor consequences. In the presence of complications, however, T2DM was perceived as more unpredictable with more (serious) consequences and less controllable by self-care or medical treatment. Furthermore, engagement in exercise and foot care was reported more often by patients with complications. Self-care was related to certain illness perception dimensions, and interactions between perceptions and complications were found.

Conclusion: T2DM patients in the first years of their illness are often recommended to make lifestyle changes in the absence of noticeable diabetes-related symptoms or complaints. As many T2DM patients do not seem to perceive their condition to be serious and postpone lifestyle changes until diabetes-related complications appear, a major challenge for professionals is to convince asymptomatic patients of the importance of self-care.     

Social support and emotional adjustment during and after a severe life event: A study of wives of myocardial infarction patients

Abstract

This paper examines the relationship between quantitative and qualitative indicators of social support and anxiety. depression and use of health services in a sample of 37 wives of myocardial infarction (MI) patients. In a prospective design, the wives were interviewed during the acute phase of the illness, three months and 10 years post index-MI. Congruent with previous research, the quantitative aspect of social support, defined as number of persons giving help, was unrelated to adjustment, whereas qualitative aspect of social support, defined as the wives' dissatisfaction with social support, was associated with depression and use of health services. The observed association indicated, however, an effect in the opposite direction of the social support model. The findings were unexpected and may be due to a small sample. An alternative explanation is that long-term relationship between depression and social support is more complex, and more long-term studies are needed in this field.     

Dialectical Behavior Therapy Group Skills Training in a Community Mental Health Setting: A Pilot Study

Abstract

Effective and affordable therapies are needed for treating people with severe and persistent mental illness in a community mental health setting. In this pilot study, we evaluated the effectiveness of a modified dialectical behavior therapy (DBT) protocol for improving symptoms and functioning in a cohort of persons with severe and persistent mental illness. We provided six months of weekly DBT skills training in a group setting. Depression symptoms decreased significantly after treatment. There was a wide range of number of sessions attended, with a minority of the participants completing the full course of treatment. Increased attendance was correlated with improvements in depression symptoms, overall symptoms, quality of life, and community functioning. The study findings suggest that the group skills training component of DBT can be successfully implemented in a community mental health center and that further research to determine its efficacy in comparison to other treatments is warranted.