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Biomedical subjects

Susan McClement

Publications and source records attributed to Susan McClement.

18 recordsLinked to original sources
PubMed2006

Personality, neuroticism, and coping towards the end of life.

The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

Adaptation, Psychological↗
PubMed2006

Dignity in the terminally ill: revisited.

BACKGROUND: Several studies have been conducted examining the notion of dignity and how it is understood and experienced by people as they approach death. OBJECTIVE: The purpose of this study was to use a quantitative approach to validate the Dignity Model, originally based on qualitative data. DESIGN: Themes and subthemes from the Dignity Model were used to devise 22 items; patients were asked the extent to which they believed these specific issues were or could be related to their sense of dignity. RESULTS: Of 211 patients receiving palliative care, "not being treated with respect or understanding" (87.1%) and "feeling a burden to others" (87.1%) were the issues most identified as having an influence on their sense of dignity. All but 1 of the 22 items were endorsed by more that half of the patients; 16 items were endorsed by more than 70% of the patients. Demographic variables such as gender, age, education, and religious affiliation had an influence on what items patients ascribed to their sense of dignity. "Feeling life no longer had meaning or purpose" was the only variable to enter a logistic regression model predicting overall sense of dignity. CONCLUSIONS: This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient's sense of dignity. Sensitivity to these issues will draw care providers closer to being able to provide comprehensive, dignity conserving care.

Aged, 80 and over↗
PubMed2006

Nurses' perceptions of quality end-of-life care on an acute medical ward.

AIM: This paper reports the findings of a study that generated a conceptual model of the nursing behaviours and social processes inherent in the provision of quality end-of-life care from the perspective of nurses working in an acute care setting. BACKGROUND: The majority of research examining the issue of quality end-of-life care has focused on the perspectives of patients, family members and physicians. The perspective of nurses has generally received minimal research attention, with the exception of those working within palliative or critical care. The vast majority of hospitalized patients, however, continue to be cared for and die on medical units. To date, little research has been conducted examining definitions and determinants of quality end-of-life care from the perspective of nurses working in acute adult medical settings. METHOD: Grounded theory method was used in this study of 10 nurses working on acute medical units at two tertiary university-affiliated hospitals in central Canada. Data were collected during 2002 by interview and participant observation. FINDINGS: The basic social problem uncovered in the data was that of nurses striving to provide high quality end-of-life care on an acute medical unit while being pulled in all directions. The unifying theme of 'Creating a haven for safe passage' integrated the major sub-processes into the key analytic model in this study. 'Creating a haven for safe passage' represents a continuum of behaviours and strategies, and includes the sub-processes of 'facilitating and maintain a lane change'; 'getting what's needed'; 'being there'; and 'manipulating the care environment'. CONCLUSION: The ability of nurses to provide quality end-of-life care on an acute medical unit is a complex process involving many factors related to the patient, family, healthcare providers and the context in which the provision of end-of-life care takes place.

Adult↗
PubMed2006

Measurement of psychological distress in palliative care.

Research investigating the psychological distress of palliative care patients has contributed to our understanding of the needs and experiences of individuals approaching death. This paper aims to provide a brief review of such measurement of psychological distress in palliative care, focusing on established psychiatric and psychological research tools, and quantitative research methods. This includes clinical screening and diagnostic assessment instruments used to identify key distress-related symptoms and the presence of common clinical syndromes, such as depression, anxiety, delirium, as well as the broader psychological dimensions of suffering, such as existential concerns, spirituality, hope and demoralisation. There are important considerations in undertaking psychological research in palliative care, such as maintaining a balance between the methods and measurements that will address key research questions, and sensitivity to the range of physical and emotional demands facing individuals at the point of receiving palliative care. The clinical application of psychological and psychiatric research tools and methods can aid the detection of psychological distress, aid the thorough assessment of the psychological dimension of the patients' illness and care, aid the identification of individuals who would benefit from specific psychotherapeutic or pharmacologic interventions, and the evaluation of response to treatments.

Anxiety↗
PubMed2006

Palliative sedation: nurses' perceptions.

Patients with advanced illnesses suffer from a myriad of distressing symptoms. Palliative care aims to alleviate the distress caused by such symptoms. In extreme circumstances palliative sedation may be implemented to manage symptom distress that is not responsive to standard treatment modalities. Nurses are involved in the care of patients receiving palliative sedation as well as their families. To date, however, little research has been conducted examining the nurses' experiences with, and perceptions about the use of palliative sedation in end-of-life care. In order to redress this gap in the literature a descriptive-exploratory study guided by the theory of symbolic interactionism was conducted. Face-to-face interviews were conducted with 10 nurses working on an adult in-patient palliative care unit within a long-term care facility in Canada. The major theme emerging from content analysis of interview transcripts was that of 'Working your way through the quagmire'. The metaphor of the quagmire captured the difficult and complex issues nurses grappled with in instances where palliative sedation was used, and integrates the major categories into the key analytic model emerging from this study.

Adult↗
PubMed2006

The challenge of providing palliative care in the nursing home: part 1 external factors.

One impact of the baby boom generation and improved medical care is that nursing homes will be the place of care and site of death for growing numbers of frail, older persons dying of chronic progressive illnesses. The nursing home settings may appear to be an appropriate environment wherein residents could receive palliative care, but the literature suggests that provision of such care is replete with challenge. Some of these challenges are external to the nursing home environment and are beyond the setting's control, others have internal origins and to some extent may be under the home's control. In part I of this two-part article, we review and critically analyse the primary external factors identified in the literature -- characteristics of the residents -- as they impact on the ability of care homes to deliver palliative care.

Activities of Daily Living↗
PubMed2005

Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

PURPOSE: This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. PATIENTS AND METHODS: Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS: Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION: Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.

Adaptation, Psychological↗
PubMed2005

Parental experiences of adult child death from cancer.

BACKGROUND: Although parents experience the death of adult children diagnosed with cancer, most of the literature on adult child death has examined the issues of violent death or suicide. Where death from cancer has been studied, the focus has been mainly on psychological outcomes. Little is known about parents' experiences with this phenomenon. OBJECTIVE: To understand parents' experience of having an adult child die from cancer. DESIGN: Descriptive-exploratory study utilizing semistructured interviews with parents of 10 adult children who had died of cancer. SETTING: Parents who had lost a child to cancer were interviewed in their own home or in the interviewer's office. ANALYSIS: Interviews were recorded, transcribed, and analyzed. Latent content analysis and constant comparison techniques were used to develop coding labels, which were then classified into categories and subcategories. RESULTS: Parents experienced a tension between their strong desire to "parent" their child, and their recognition that their child was an autonomous adult, sometimes with a spouse and family who took precedence over them. Parents of a dying child felt helpless, and sometimes were excluded/unacknowledged by health care professionals. To cope, they reconfigured their parent role using various strategies. After the death of their child further reconfiguring takes place, including preserving memories of the child, and talking about him/her. Continuing family and social relationships influence this stage. CONCLUSION: The conflict of wishing to "parent" a dying adult child while recognizing the child's autonomy creates uncertainty for parents at an already stressful time. Facilitating parent-child communication during the illness is important. After the death of the adult child parents may continue to face difficulty with their perceived role in society (parent and/or bereaved person), and sometimes within their family. Health care professionals should make greater efforts to include the parents of the dying adult in the circle of care. The bereavement experience of these parents is intense and long-lasting. Further research is needed regarding the ways in which health care providers can best assist parents to successfully integrate this profound loss.

Adult Children↗
PubMed2005

A qualitative analysis of the experience of uncertainty while awaiting coronary artery bypass surgery.

The aim of this article is to present a qualitative examination of the phenomenon of uncertainty in patients awaiting CABG surgery. Cardiac symptoms are presented as an antecedent to uncertainty and both positive and negative outcomes of uncertainty are discussed. Semi-structured interview questions, based on Mishel's Uncertainty in Illness Theory, were developed to investigate the experience of waiting for CABG surgery and identify what patients were doing: to make their cardiac symptoms more manageable, to relieve their own anxiety while waiting, and to identify why patients felt having CABG surgery would benefit them. Telephone interviews were conducted with a self-selected sample of 25 participants. The qualitative results presented are part of a larger multimethod study examining the psychosomatic experience of waiting for CABG surgery. Data collected from telephone interviews were analyzed using content analysis and constant comparison techniques. Content analysis identified three conceptual categories: i) taking responsibility; ii) getting my life back; and iii) getting it over with. Strategies associated with each of these categories, the consequences of the strategies, and factors that facilitate or constrain their use were also identified. Participants were actively trying to lessen the impact of their cardiac symptoms and were very aware of their own bodies and what actions would exacerbate symptoms or relieve symptoms if they occurred. Participants envisioned physical and psychological improvements for post-CABG surgery. Participants also identified actions they took to limit their anxiety while waiting. Anxiety levels were influenced by family members as well as stories they had heard from friends, family, or acquaintances who had also experienced CABG. This study concluded that the lengthy waits experienced by some patients can create significant psychological disturbance including anxiety and uncertainty about the future. In addition, patient symptom status requires attentive monitoring.

Adaptation, Psychological↗
PubMed2004

Defining dignity in terminally ill cancer patients: a factor-analytic approach.

The construct of 'dignity' is frequently raised in discussions about quality end of life care for terminal cancer patients, and is invoked by parties on both sides of the euthanasia debate. Lacking in this general debate has been an empirical explication of 'dignity' from the viewpoint of cancer patients themselves. The purpose of the present study was to use factor-analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well-being. The results showed that although the majority of patients had an intact sense of dignity, there were 99 (46%) patients who reported at least some, or occasional loss of dignity, and 16 (7.5%) patients who indicated that loss of dignity was a significant problem. The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life. Subsequent regression analyses of modifiable factors produced a final two-factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance. These results provide empirical support for the dignity model, and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence.

Aged↗
PubMed2004

Dignity and psychotherapeutic considerations in end-of-life care.

The basic tenets of palliative care are frequently subsumed under the goal of helping patients to die with dignity. Our research group has studied the issue of dignity, with dying patients serving as the primary informants. This paper reviews some of our findings, including an overview of the Dignity Model that derives from our empirical work. Furthermore, this paper summarizes various psychotherapeutic approaches which have been considered for this vulnerable patient population. Finally, we provide the rationale based on the Dignity Model for a psychotherapeutic intervention we have coined Dignity Therapy. This brief, individualized therapeutic approach has been informed by our dignity work, and specifically designed for application in patients nearing death.

Attitude to Death↗
PubMed2002

Dignity in the terminally ill: a developing empirical model.

Despite use of the term dignity in arguments for and against a patient's self-governance in matters pertaining to death, there is little empirical research on how this term has been used by patients who are nearing death. The objective of this study was to determine how dying patients understand and define the term dignity, in order to develop a model of dignity in the terminally ill. A semi-structured interview was designed to explore how patients cope with their advanced cancer and to detail their perceptions of dignity. Interviews were audiotaped and transcribed verbatim. A consecutive sample of 50 consenting patients with advanced terminal cancer were recruited over a 15-month period of time from an urban extended care hospital housing a specialized unit for palliative care. This unit provides both inpatient services. and coordinates end-of-life care community based programming. Data were analysed using latent content analysis and constant comparison techniques. Four members of the research team independently coded the transcribed data, to develop conceptually meaningful categories of responses. Operational definitions were written for major categories, themes and sub-themes. Three major categories emerged from the qualitative analysis, including illness-related concerns; dignity conserving repertoire; and social dignity inventory. These broad categories and their carefully defined themes and sub-themes form the foundation for an emerging model of dignity amongst the dying. The concept of dignity and the dignity model offer a way of understanding how patients face advancing terminal illness. This will serve to promote dignity and the quality of life of patients nearing death.

Activities of Daily Living↗
PubMed2002

Defining and determining quality in end-of-life care.

Health care providers are directing increased attention toward improving end-of-life care for patients who are dying and their families (Support Principle Investigators, 1995; Ferrell et al, 2000). Integral to the goal is determining what constitutes quality care for the dying. One of the major problems, however, in making such a determination results from the lack of consensus regarding a conceptual definition of quality. The purpose of this article is to stimulate debate and discussion on the meaning of quality in the context of providing end-of-life care. To aid in this discussion, the various perspectives of what constitutes quality in health-care practice will be discussed with special attention being paid to the delivery of quality end-of-life care. Conceptual decisions drive approaches to research method and measurement (Kristjanson, 1992), therefore an examination of the issues surrounding the measurement of quality health care in the context of care for the dying will also be explored.

Health Services Research↗
PubMedDate not supplied

Dignity in the terminally ill: a cross-sectional, cohort study.

BACKGROUND: Considerations of dignity are often raised in reference to the care of dying patients. However, little research that addresses this issue has been done. Our aim was to identify the extent to which dying patients perceive they are able to maintain a sense of dignity, and to ascertain how demographic and disease-specific variables relate to the issue of dignity in these individuals. METHODS: We did a cross-sectional study of a cohort of terminally ill patients with cancer, who had a life expectancy of less than 6 months. We enrolled 213 patients from two palliative care units in Winnipeg, Canada, and asked them to rate their sense of dignity. Our main outcome measures included: a 7-point sense of dignity item; the symptom distress scale; the McGill pain questionnaire; the index of independence in activities of daily living (IADL); a quality of life scale; a brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, and will to live; burden to others; and requirement for social support. FINDINGS: 16 of 213 patients (7.5%; 95% CI 4-11) indicated that loss of dignity was a great concern. These patients were far more than likely than the rest of the cohort to report psychological distress and symptom distress, heightened dependency needs, and loss of will to live. INTERPRETATION: Loss of dignity is closely associated with certain types of distress often seen among the terminally ill. Preservation of dignity should be an overall aim of treatment and care in patients who are nearing death.

Activities of Daily Living↗
PubMedDate not supplied

Cancer anorexia-cachexia syndrome: psychological effect on the patient and family.

The majority of patients with advanced cancer experience weight loss, reduced appetite, fatigue, and weakness. Chronic nausea and early satiety may also occur. This constellation of symptoms is known as the cancer anorexia-cachexia syndrome. Together with cancer pain, cancer anorexia-cachexia syndrome has been identified as 1 of the 2 most frequent and devastating problems affecting individuals with advanced malignancies. Research examining the issue of cancer anorexia-cachexia syndrome has been conducted; however, such work is largely biomedical in orientation. In contrast, the psychologic dimensions of the cancer anorexia-cachexia syndrome experience from the perspective of terminally ill patients and their family members is less well explored or described. The ability to provide psychosocial support to patients and families requires that caregivers appreciate the psychologic effect of cancer anorexia and cachexia on these individuals. This article examines that effect in light of existing knowledge and discusses the clinical implications arising from this work.

Anorexia↗
PubMedDate not supplied

Understanding the will to live in patients nearing death.

This study examined concurrent influences on the will to live in 189 patients with end-stage cancer The authors found significant correlations between the will to live and existential, psychological, social, and, to a lesser degree, physical sources of distress. Existential variables proved to have the most influence, with hopelessness, burden to others, and dignity entering into the final model. Health care providers must learn to appreciate the importance of existential issues and their ability to influence the will to live among patients nearing death.

Activities of Daily Living↗