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PubMed1999

Assessment of quality of life in palliative care--psychometric properties of a short questionnaire.

The psychometric properties of a short but comprehensive quality-of-life instrument, developed especially for cancer patients in the palliative care setting are presented. Items from physical, psychological, social and existential domains are included. The findings suggest that the AQEL (Assessment of Quality of Life at the End of Life) instrument is both valid and reliable, but further trials with more patients are needed.

Adult↗

PubMed2003

None of us will ever be the same again: reactions of American midlife women to 9/11.

According to terror management theory (TMT), an event that heightens awareness of death produces the need to defend against existential anxiety. The horrifying events of September 11, 2001 (9/11), created an unparalleled opportunity to apply TMT beyond the laboratory. This study examined post-9/11 stress (via perceived stress scale [PSS] scores) and interview responses of a diverse community sample of American midlife women (ages 35-60). Previous studies showed that many women have high stress during midlife, suggesting that 9/11 could have a unique impact on this segment of the U.S. population. Education of the sample ranged from 12 to 23 years. Seventy-five percent had children and 70.6% were married. Data analysis showed that 4 to 6 months after 9/11, 61% of the women were still distressed, exhibiting symptoms of fear, sadness, anger, powerlessness, distrust, and vigilance. Highly stressed women (upper 25% on PSS) differed in several respects from low-stress women (lower 25% on PSS). As predicted by TMT, core values central to a woman's world view were activated by 9/11. Patriotism and altruism increased, but bigotry intensified as well. Major changes (e.g., marriage, moving) were undertaken only by a small percentage (18%), but all expressed the view, "None of us will ever be the same again." Women who had experienced previous trauma felt that their background actually helped them cope.

Adaptation, Psychological↗

PubMed1989

The role of imagery in the treatment of a patient with malignant melanoma.

Feelings of hopelessness and apathy in critically ill patients can present significant obstacles to rational, logical solutions. Forms of psychotherapy which are entirely verbal are often limited in their effectiveness to resolve such existential crisis. Other modes of therapy which employ imagery may be more effective. The patient's own imagery appears to have particular value as a vehicle for resolving impossible dilemmas which are experienced by patients facing imminent death.

Adult↗

PubMed1996

Grief and AIDS: surviving catastrophic multiple loss.

This article explores the issues of grief brought about by the AIDS epidemic. As people affected by the epidemic experience multiple deaths in both their personal and professional lives, the parallel epidemic of grief is reaching crisis proportions. Traditional grief responses are compared with multiple loss grief and appropriate clinical interventions are explored. The phenomena of trauma, survivor guilt, Post-Traumatic Stress Disorder and other historic examples of multiple loss (holocausts) are examined. The existential questions of how to hold hope as we live in an "abyss of trauma, death and grief" concludes this article.

Acquired Immunodeficiency Syndrome↗

PubMedDate not supplied

Development and validation of the Hogan Grief Reaction Checklist.

The purpose of this article is to provide data on a recently developed instrument to measure the multidimensional nature of the bereavement process. In contrast to widely used grief instruments that have been developed using rational methods of instrument construction, the Hogan Grief Reaction Checklist (HGRC) was developed empirically from data collected from bereaved adults who had experienced the death of a loved one. Factor analysis of the HGRC revealed 6 factors in the normal trajectory of the grieving process: Despair, Panic Behavior, Blame and Anger, Detachment, Disorganization, and Personal Growth. Additional data are provided that support reliability and validity of the HGRC as well as its ability to discriminate variability in the grieving process as a function of cause of death and time lapsed since death. Empirical support is also provided for Personal Growth as an integral component of the bereavement process. The article concludes by considering the substantive as well as psychometric findings of this research for such issues as traumatic grief, anticipatory grief, change in the bereaved person's self-schema, and spiritual and existential growth.

Adult↗

PubMed2004

Finding boundaries inside prison walls: case study of a terminally ill inmate.

The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing from existential therapy, the review of meaningful life events in the client's life clarifies current goals and the value of the current final stage of life. Ethical issues that arose are discussed, including pain management and compassionate release. Creative solutions to these ethical dilemmas were implemented through consideration of the overt and underlying goals of the inmate, the necessary rules and protocols of the prison, and in conjunction with professional codes of ethics.

Ethics, Medical↗

PubMed2004

Recovery following bereavement: an examination of the concept.

Herman Feifel noted that appropriate attention to one's mourning and grieving allowed the dead to die and the bereaved "to redefine and reintegrate oneself into life" (H. Feifel, 1977, p. 9). The author takes this central focus on bereavement outcomes as the springboard for an examination of the concept recovery following bereavement. He examines the meanings of the terms recover and bereavement and considers the centrality of concepts from life span human development, the life crisis literature, and existential phenomenology for defining the full possibilities of the concept of recovery following bereavement. Seminal ideas from Alexander Leighton and Thomas Attig are examined for their power to provide operational definitions for Feifel's idea about redefining and reintegrating oneself into life as the full meaning of the concept recovery following bereavement.

Adaptation, Psychological↗

PubMed2006

Continuing bonds and reconstructing meaning: mitigating complications in bereavement.

Drawing on attachment theory and constructivist conceptualizations of bereavement, the authors assessed the relation between continuing bonds coping and meaning reconstruction following the death of a loved one and complicated grief symptomatology. Five hundred six young adults in the first two years of bereavement from a variety of losses completed the Inventory of Complicated Grief along with measures of the strength of their ongoing attachment to the deceased and their capacity to make sense of the loss, find benefit in the experience, and reconstruct a progressive sense of identity following the death. Several variables concerning the survivor, his or her relationship to the deceased, and the nature of the death functioned as risk factors for heightened distress, but their role was generally moderated by meaning-making, often to the point of non-significance. In contrast, higher levels of benefit-finding and positive identity change were associated with lower levels of bereavement complication. Finally, an interaction emerged between sense-making and ongoing attachment to the deceased, suggesting that strong continuing bonds predicted greater levels of traumatic and especially separation distress, but only when the survivor was unable to make sense of the loss in personal, practical, existential, or spiritual terms.

Adaptation, Psychological↗

PubMed1986

Humanities in surgery, a life threatening situation: communicating the diagnosis.

Surgeons should be able to communicate emotion-laden information to patients effectively. In most medical schools, there is an implicit assumption that students will learn communication skills through observation of appropriate role models. Young physicians often feel ill prepared to convey such information with sensitivity and understanding. University of Massachusetts Medical School's curriculum includes a program that addresses the communication skills involved in surgical practice and the ethical issues they raise. Videotaped vignettes of doctor-patient interactions culled from dramatic and documentary sources are viewed and discussed with students in small groups. These highly evocative vignettes are of live and role played doctor-patient encounters. The elements of communication are analyzed, as are psychosocial, existential, legal and ethical issues.

Communication↗

PubMed1999

Dying, mourning, and spirituality: a psychological perspective.

Based in an unfortunate tradition that stretches back in time to Watson's behaviorism and Freud's psychoanalysis, psychology has tended to reject and to pathologize matters of the spirit. In the past 30 years, however, with the advent of what has been termed the cognitive revolution, psychology has greatly expanded the scope of its subject matter. Psychologists and thanatologists have begun to unravel the cognitive underpinnings of our assumptive world and the transformation of those underpinnings in times of crisis and stress. This article examines the cognitive basis of the spiritual experience and the use of cognitive assimilation, accommodation strategies during the process of mourning the death of a loved one, as well as during the process of living our own dying. Of special importance to mental health professionals and clergy, new research on dying, mourning, and spirituality suggests that the specific ways in which people rediscover meaning--such as belief in traditional religious doctrine, the afterlife, reincarnation, philanthropy, or a spiritual order to the universe--may be less important than the process itself. In other words, in the midst of dealing with profound loss in our lives, the ability to reascribe meaning to a changed world through spiritual transformation, religious conversion, or existential change may be more significant than the specific content by which that need is filled.

Caregivers↗

PubMed2000

Intrusive thoughts and psychological distress among breast cancer survivors: global meaning as a possible protective factor.

Previous research has consistently demonstrated a positive association between intrusive thoughts about stressful experiences and psychological distress. The strength of this relation, however, has varied considerably across studies. To examine the possibility that an individual's sense of global meaning (i.e., the existential belief that one's life has purpose and order) may moderate the relation between intrusive thoughts and psychological distress, the authors conducted telephone assessments of 61 women who had survived breast cancer. Results confirmed that the frequency of intrusive thoughts was positively related to psychological distress. Global meaning, moreover, moderated the relation between intrusive thoughts and psychological distress consistent with the authors' hypotheses. Among women with lower global meaning, more frequent intrusive thoughts were associated with higher psychological distress. No association was found between intrusive thoughts and psychological distress among those participants with higher global meaning.

Adult↗

PubMed2000

The old problem of adherence: research on treatment adherence and its relevance for HIV/AIDS.

The international published research on patient adherence was selectively reviewed with the goal of determining its relevance for the treatment of HIV/AIDS. Results show that not adhering to treatment regimes is so widespread that no combination of sociodemographic variables is reliably predictive of patients' not following doctors' orders. Achieving 100% adherence for any treatment or patient group does not appear to be realistic. Characteristics of the patient's situation, of the given therapy, and of the disease itself affect adherence. In addition, the patient-doctor relationship and the context of the treatment are important. Often overlooked are the existential dimensions of meaning, self-determination and quality of life which are particularly important for the chronically ill. Treatment needs to be negotiated individually with each patient on the basis of an open therapeutic relationship and with the help of multidimensional interventions. Lessons from the discourse on safer sex can steer adherence research and practice away from a behavioural and reductionist approach toward the context and meaning of treatment.

Acquired Immunodeficiency Syndrome↗

PubMed1995

Carers' burden and adjustment to HIV.

Empirical evidence from well designed studies into the effects on carers of caring for a person with HIV is lacking. This study investigated the correlates of carers' burden and adjustment to their caring for a person with HIV. Thirty-four carers and their HIV-infected patients were interviewed and completed self-administered scales. Measures included two psychosocial adjustment indices, a Problem Checklist (burden) and two patient health status indices. The most common elements of carer's burden were distressing emotions, relationship difficulties, somatic symptoms, and grief. Demographic variables, patient's HIV stage, nature of caregiving relationship and duration of caregiving were unrelated to carers' burden or adjustment. However, living arrangement was found to be significantly associated with carers' burden, with those carers co-residing experiencing more burden than those living apart from the patient. Carers' coping strategies were only weakly related to carer's adjustment and burden. The patients' emotional and existential concerns were strongly positively related to carers' burden and all domains of adjustment, while patients' instrumental concerns and measures of patients' health status were positively related to carers' burden. As predicted, patients had significantly poorer levels of adjustment than carers. The findings supported the use of a reciprocal determinism approach for understanding the relationship between the patient and carer and adjustment outcomes.

Adaptation, Psychological↗

PubMed2004

Shifts in the philosophical foundations of psychiatry since Jaspers: implications for psychopathology and psychotherapy.

Jaspers' AllgemeinePsychopathologie, the General Psychopathology, published in 1923, had a profound influence on the development of psychiatry. Central to it was the attempt to give the new psychiatry a philosophical foundation, the key element in which was the dichotomy between meaningful and causal connections. This dichotomy was superimposed on the earlier mind-body distinction, and both converged on the conclusion that mind and meaning were problematic from the point of view of science. The inevitable splits came to a head in the 1960's, with attacks on the one side by the other: medical psychiatry was attacked for systematically stripping madness of its meaning and hence dehumanising it, while psychoanalysis, the champion of meaning, was rounded upon for being unscientific. At the same time however there was emerging a new paradigm that effectively deconstructed the problematic, namely, the cognitive or information-processing paradigm. This paradigm has made it possible to construct a unified bio-psycho-social science of psychopathology. In psychotherapy, the shift has been away from the view that meaning is non-causal, a matter only of existential significance or of hermeneutic interpretation, towards the working assumption that it is crucially involved in aetiology, as in the new cognitive behaviour therapy paradigm.

Cognitive Behavioral Therapy↗

PubMed2002

Coping potential and disability--sense of coherence in adults with cerebral palsy.

PURPOSE: The aim of the present study was to investigate sense of coherence (SOC) in adults with cerebral palsy (CP) compared to the general population. METHOD: A questionnaire was sent to a representative sample of adults with CP, including the 3-item version of SOC and items on their life situation and follow-up programmes. The study included persons over 18 years of age with CP and without intellectual disability. The results were compared with the results from a reference group. RESULTS: The 406 respondents with CP (48.5% females, 51.5% males) were 18-72 years of age. The distribution of the different types of CP coincided with international epidemiological studies. Mean SOC was significantly lower in the adults with CP than in the reference group. The largest difference was found in the domain of comprehensibility. The factors most important in relation to SOC were level of education, marital status, life satisfaction and fatigue. CONCLUSIONS: Early experiences of predictability, balance between challenges and personal resources and finding these challenges worthy of investment, are prerequisites for developing sense of coherence. The present study suggests that these factors are less present in early socialization of persons with CP compared to the general population, and underlines the need for follow-up programmes that emphasize existential aspects and coping strategies.

Adaptation, Psychological↗

PubMed1999

What does a home mean and when does it cease to be a home? Home as a setting for rehabilitation and care.

PURPOSE: This article addresses three issues: (1) what does a home mean to a person? (2) what happens when the patients are rehabilitated in the home? and (3) can the home become a workplace for a professional? METHOD: A literature review based on research literature and on the author's research project in the north of Sweden 'Rehabilitation in a home setting--ethical, psychological and occupational therapeutic aspects,. RESULTS: For most people, the home is an important and meaningful place, where ultimate goals can be cultivated, sheltered from the intrusions of public life. In connection with chronic illness, functional impairment and rehabilitation in the home, the individual will often lose the home as a private territory and much of his/her own autonomy. No longer is the home an existential centre for the family, but a place where many unfamiliar people come and go. Rehabilitation in a home setting means, furthermore, that the public sector is moved into the home, and the home has to function as a public workplace, ensuring a good working environment. CONCLUSIONS: The question for the future is: can the combination of home and public workplace work at all? More research is needed to answer this question. Prior documented experiences show that it is difficult.

Family↗

PubMedDate not supplied

Experiences of women with breast cancer: exchanging social support over the CHESS computer network.

Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.

Breast Neoplasms↗

PubMed2005

Lifeworld perspectives on assistive devices: lived experiences of spouses of persons with stroke.

The purpose of this study was to explore how spouses of persons with a disability following stroke describe their lived experiences regarding assistive devices in everyday life. A phenomenological lifeworld approach was used and conversational interviews were conducted with 12 spouses. Their lived experiences of assistive devices were explored in relation to four lifeworld existentials intertwined in everyday life. The results showed that lived body concerns aspects of feelings, habits, and incorporation of the devices with one's own body. The devices are, from the spouses' perspective, a prerequisite for their partner with stroke living at home. Successively the devices are incorporated into the couples' homes, and they provide a new view of the environment, aspects related to lived space. The devices bring about a changed relation to lived time, related to past, present, and future. Further, lived human relation concerns changed relationships to husbands/wives with stroke, including a great responsibility due to the devices and their usage. The results also included stigmatizing aspects and a twofold relationship to health professionals regarding participation in decisions about prescribing assistive devices. Understanding the unique meaning of assistive devices from the spouses' perspective is vital for occupational therapists prescribing such devices.

Adult↗