Latent class analysis differentiation of adjustment disorder and demoralization, more severe depressive and anxiety disorders, and somatic symptoms in patients with cancer.

OBJECTIVES: Demoralization as a form of existential distress involves poor coping, low morale, hopelessness, helplessness, and meaninglessness. In a secondary analysis of a cohort of German cancer patients, we aimed to explore latent class structure to assess the contribution that symptoms of demoralization make to anhedonic depression, anxiety, adjustment, and somatic disorders. METHODS: Measures of demoralization, depression, anxiety, physical symptoms, and functional impairment had been completed cross-sectionally by 1527 patients with early or advanced cancer. Latent class analysis used maximum likelihood techniques to define the unobserved latent constructs that can be predicted as symptom clusters. Individual patients were assigned to the most probable class. Classes were compared on demographics, and logistic regression assessed the odds of individual items predicting each class. RESULTS: A 4-class model provided the best fit. Class 1 (n = 829, 54.3%) was defined by the absence of distress; Classes 2 to 4 all carried functional impairment. Class 2 (n = 333, 21.8%) was differentiated by somatic symptoms (sleep, tiredness, and appetite); Class 3 (n = 163, 10.7%) by anhedonia, anxiety, and severe demoralization; and Class 4 (n = 202, 13.2%) by adjustment and moderate demoralization. Members of Class 3 were more likely to be younger, female, anhedonic, depressed, and anxious. In both Classes 3 and 4, functional impairment, physical symptom burden, and suicidal ideation were present. CONCLUSIONS: In contrast with the severe symptom cluster carrying anhedonia, anxiety, and demoralization, the moderate symptom cluster was formed by patients with demoralization and impaired functioning, a clinical picture consistent with a unidimensional model of adjustment disorder.

Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters.

This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face-to-face delivery. A lack of funding, a culture of "learning on the job", and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required.

Exploratory examination of the utility of demoralization as a diagnostic specifier for adjustment disorder and major depression.

OBJECTIVE: Demoralization, a state of lowered morale and poor coping, has a prevalence of 13-18% among patients with advanced cancer. We surveyed clinicians' perspectives of the utility of "with demoralization" as a diagnostic specifier for adjustment and depressive disorders. METHOD: Using comparative clinical vignettes in a field survey, clinicians from a range of disciplines were asked their perception of the utility of diagnosis and treatment options. Response frequencies were compared using Cochran's Q and McNemar's tests, with sensitivity and specificity rated against expert rankings of diagnosis. Analysis of variance and paired t-tests examined significant differences in ratings of utility. RESULTS: Vignettes were assessed by 280 clinicians; 77% supported utility of the category 'adjustment disorder with demoralization' compared to 33% supporting 'adjustment disorder with anxiety' (McNemar test, p<0.001), while 83% supported the utility of 'with demoralization' for major depressive episode, matching 83% perceiving utility for 'with melancholia.' Sensitivity and specificity ratings were 77% and 94% for adjustment disorder with demoralization and 83% and 91% for major depression with demoralization. CONCLUSION: Clinicians perceived the specifier 'with demoralization' to deepen diagnostic understanding, treatment choice, and ability to communicate with clinicians and patients, particularly for the category of adjustment disorder with demoralization.

Individualised mindfulness-based stress reduction for head and neck cancer patients undergoing radiotherapy of curative intent: a descriptive pilot study.

People with head and neck cancer (HNC) experience elevated symptom toxicity and co-morbidity as a result of treatment, which is associated with poorer psychosocial and quality-of-life (QoL) outcomes. This Phase I study examined whether an individualised mindfulness-based stress reduction (IMBSR) programme could be successfully used with HNC patients undergoing curative treatment. Primary aims were to explore feasibility, compliance, acceptability and fidelity. Secondary aims were to determine whether (1) participation in the intervention was associated with changes in post-intervention mindfulness and (2) post-intervention mindfulness was associated with post-intervention distress and QoL. Nineteen HNC patients participated in a seven-session IMBSR programme with pre- and post-test outcome measures of psychological distress, depression, anxiety and QoL. Primary aims were assessed by therapists or participants. Mindfulness, distress and QoL were assessed using self-report questionnaires at pre- and post-intervention. Longer time spent meditating daily was associated with higher post-intervention mindfulness. After controlling for pre-intervention mindfulness, there was an association between higher post-intervention mindfulness and lower psychological distress and higher total, social and emotional QoL. This study offers important preliminary evidence than an IMBSR intervention can be administered to HNC patients during active cancer treatment. A randomised controlled trial is warranted to confirm these findings.

Correspondence of physical activity and fruit/vegetable consumption among prostate cancer survivors and their spouses.

A healthy diet and physical activity are recommended for prostate cancer survivors. Interdependence theory suggests that the spousal relationship influences those health behaviours and the degree of correspondence may be an indicator of this influence. This study evaluated the correspondence between prostate cancer survivors and spouses regarding physical activity and fruit/vegetable consumption. Baseline data from an ongoing randomised control trial were utilised. Men who had been treated for prostate cancer within the past year and their partners (N = 132 couples) completed self-report measures of physical activity, fruit/vegetable consumption, relationship satisfaction and support for partner's healthy diet and physical activity. Couples reported similar fruit/vegetable consumption and physical activity as indicated by high levels of correspondence. Greater fruit/vegetable correspondence was related to higher relationship satisfaction (F = 4.14, P = 0.018) and greater patient (F = 13.29, P < 0.001) and spouse-rated support (F = 7.2, P < 0.001). Greater physical activity correspondence was related to greater patient (F = 3.57, P = 0.028) and spouse-rated support (F = 4.59, P = 0.031). Prostate cancer survivors and spouses may influence each other's diet and exercise behaviours. Couple-based interventions may promote healthy behaviours among this population.

Latino values in the context of palliative care: illustrative cases from the Family Focused Grief Therapy trial.

BACKGROUND: Clinicians meet a variety of ethnicities among patients and families in hospice programs. This article focuses on Latino families. METHODS: Within a controlled trial of family therapy in the context of palliative care, 17 families identified as Hispanic. Five were examined qualitatively herein. RESULTS: A synopsis of each family's narrative is presented here. Patterns of strong family loyalty (Familismo), the gender roles of Machismo and Marianismo, the importance of family tradition, expectations about caregiving, and the place of faith and religion emerged as prominent and able potentially to impact on the therapy. CONCLUSIONS: Family therapists need to be thoughtful about cultural issues as they strive to support families.

Psychosocial adaptation in female partners of men with prostate cancer.

The objective was to explore the psychosocial adaptation of female partners living with men with a diagnosis of either localized or metastatic prostate cancer. Semi-structured qualitative interviews were conducted with 50 women at two time points (baseline and 6 months later). The interviews examined emotions, experiences, attitudes to sexual and continence issues and treatment decision making. As part of a larger prospective observational study, demographic data and scores for depression and anxiety were collected. Initial analysis demonstrated that the group of 11 women assessed as distressed on the anxiety and depression measures described reduced coping skills and poorer adaptation after 6 months. In contrast, the 39 women in the non-distressed group reported emotional adaptation that fitted the Lazarus and Folkman pattern of coping through appraisal of the impact of the diagnosis on their partner and themselves, appraisal of coping strategies and reappraisal of the situation. A surprise finding was the high level of resilience displayed by majority of these women. Results suggest that a psychosocial intervention could strengthen healthy adaptation and provide better coping skills for distressed couples.

Interviewing patients using interpreters in an oncology setting: initial evaluation of a communication skills module.

OBJECTIVES: To develop a communication skills training (CST) module for health care professionals, particularly in the area of oncology, on how to conduct interviews using interpreters and to evaluate the module in terms of participant's self-efficacy and satisfaction. METHODS: Forty-seven multi-specialty health care providers from the New York Metropolitan Area attended a communication skills module at a Comprehensive Cancer Care Center about how to conduct clinical interviews utilizing interpreters. The development of this module was on the basis of current literature and followed the Comskil model previously utilized for other doctor-patient CSTs. Participants were given pre- and post-surveys to evaluate their own confidence as well as the helpfulness of the module. RESULTS: On the basis of a retrospective pre-post measure, participants reported an increase in their confidence about interviewing patients via translators. In addition, at least 80% of participants reported their satisfaction with the various components of the module by either agreeing or strongly agreeing with the different statements. CONCLUSIONS: We have developed a module that trains clinicians in effective collaboration with professional medical interpreters and shown its ability to increase the confidence of clinician's to work with limited English proficiency patients. Our approach intends to minimize not only the language barrier but also the cultural barriers that could potentially interfere with patients' care. PRACTICE IMPLICATIONS: This work has important practice implications in the oncology setting, where cultural sensitivity is paramount and empathic exchange with the patient optimizes their sense of being well supported by their health care team. We believe that this model is generalizable to many other medical settings where use needs to be made of a professional interpreter.

Constructions of dignity in end-of-life care.

The meaning of dignity is commonly assumed but rarely examined in palliative care. Dying with dignity often forms the basis of clinical decision making at the end of life, but is constructed differently depending upon setting and context. A discourse analysis of patient and family case studies found that relationships and embodiment were important aspects of dignity that have been neglected in the literature, although these constructions of dignity matter to dying people and their families. An understanding of these constructions can assist clinicians in providing sensitive palliative care across a range of community and medical settings.

Psychospiritual and existential distress. The challenge for palliative care.

BACKGROUND: Suffering threatens the integrity of the person, never more so in palliative care than when existential distress is left unaddressed. OBJECTIVE: To describe a framework for considering existential distress, for use by the clinician, which includes issues of death anxiety, meaning of life, grief resulting from loss, isolation, loss of control and loss of dignity. DISCUSSION: Each existential challenge operates across a spectrum of response from successful adaptation to morbid complication. Clinical responses to such predicaments and their complications described herein, are exemplified by the demoralisation syndrome and its treatment. Boundary violations that arise from a 'burnt out' clinician can be avoided. Our goal is to ameliorate suffering and help our patients accomplish a more peaceful journey during their dying.

Dispensing death, desiring death: an exploration of medical roles and patient motivation during the period of legalized euthanasia in Australia.

A qualitative case study was conducted to explore the clinical decision making processes that underpinned the practice of euthanasia under the Rights of the Terminally Ill (ROTI) Act. The key informant for this research was Philip Nitschke, the general practitioner responsible for the legal cases of euthanasia. His information was supported by extensive document analysis based on the public texts created by patients in the form of letters and documentaries. Further collaborating sources were those texts generated by the media, rights groups, politicians, the coroner's cort, and the literature on euthanasia and assisted suicide. A key study finding was that the ROTI legislation did not adequately provide for the specific medical situation in the Northern Territory, Australia. The medical roles, as proscribed by the legislation, carried many inherent assumptions about the health care context and the availability of appropriately qualified medical staff committed to providing euthanasia. These assumptions translated into difficulties in establishing clinical practices for the provision of euthanasia. A further finding concerned the motivations of those who requested euthanasia. This article addresses the medical roles and the motivations of those seeking euthanasia.

The Mental Adjustment to Cancer (MAC) scale: replication and refinement in 632 breast cancer patients.

BACKGROUND: Assessment of adjustment of patients in cancer treatment trials is becoming more common and increasingly regarded as a useful outcome measure. The widely used Mental Adjustment to Cancer (MAC) Scale was designed to measure Fighting Spirit (FS), Anxious Preoccupation (AP), Helpless-hopelessness (HH) and Fatalism. METHODS: Questionnaire responses from 632 breast cancer patients were randomly divided into two groups, one for exploratory analyses and possible scale refinement, and the other for validation purposes. RESULTS: Estimates of reliability (Cronbach's alpha) were satisfactory for two scales, FS (alpha = 0.85) and HH (alpha = 0.81), but lower for AP (alpha = 0.65) and Fatalism (alpha = 0.64). Exploratory factor analysis suggested that the MAC Scale might be measuring six independent constructs including two related to Fighting Spirit (Positive Orientation to the Illness, Minimizing the Illness), two related to Fatalism (Fatalism-revised, Loss of Control), a construct we have named Angst, and an unchanged HH construct. Scales developed to measure these constructs were satisfactorily replicated in confirmatory analyses but some reliabilities were lower than desirable. The general structure of the MAC Scale remained little changed despite the division of two scales and the suggested removal of six items. The refined scales correlated with the Hospital Anxiety and Depression scale and the Medical Coping Modes Questionnaire, indicating good concurrent validity. CONCLUSIONS: While reasonable reliability of the original scales persists through analyses of the MAC Scale, the original factor structure could not be reproduced. Six refined constructs with strong construct validity were identified within the overall domain of mental adjustment to cancer.

Seven deaths in Darwin: case studies under the Rights of the Terminally Ill Act, Northern Territory, Australia.

BACKGROUND: During the 9 months between July, 1996, and March, 1997, the provision of euthanasia for the terminally ill was legal in the Northern Territory of Australia. Seven patients made formal use of the Rights of the Terminally Ill (ROTI) Act; four died under the Act. We report their clinical details and the decision-making process required by the Act. METHODS: We taped in-depth interviews with the general practitioner who provided euthanasia. Further information was available from public texts created by patients, the media, and the coroner. FINDINGS: All seven patients had cancer, most at advanced stages. Three were socially isolated. Symptoms of depression were common. Having met criteria of the Act, some patients deferred their decision for a time before proceeding with euthanasia. Medical opinions about the terminal nature of illness differed. INTERPRETATION: Provision of opinions about the terminal nature of illness and the mental health of the patient, as required by the ROTI Act, created problematic gatekeeping roles for the doctors involved.

Psychological morbidity and quality of life in Australian women with early-stage breast cancer: a cross-sectional survey.

OBJECTIVE: To determine the prevalence of psychological morbidity and describe quality of life in women with early-stage breast cancer. DESIGN: Cross-sectional descriptive study (3 months after conservative breast surgery or mastectomy) of patients from nine general hospitals in Melbourne, Victoria, October 1994 to March 1997. PARTICIPANTS: 303 women with early-stage breast cancer entering a randomised trial of adjuvant psychological group therapy; mean age, 46 years (SD, 8). MAIN OUTCOME MEASURES: Diagnostic and Statistical Manual of Mental Health (DSM)-IV psychiatric diagnoses generated by the Monash Interview for Liaison Psychiatry; quality-of-life data based on the the European Organization for Research and Treatment of Cancer quality-of-life questionnaire (QLQ)-C30 (core) and QLQ-BR23 (breast module) instruments. RESULTS: 45% of the women (135/303) had a psychiatric disorder; 42% (127) of the sample had depression or anxiety, or both; there was minor depression in 82 (27.1%), an anxiety disorder in 26 (8.6%), major depression in 29 (9.6%) and a phobic disorder in 21 (6.9%). 20% of women (61) had more than one disorder. On quality-of-life measures nearly one-third of the women felt less attractive and most had lost interest in sexual activity. There was substantial distress about hair loss. Symptoms of lymphoedema were described by 13 women (4.3%). Breast conservation surgery was associated with a better body image (P<0.01). CONCLUSION: Women recently diagnosed with early-stage breast cancer have high rates of psychiatric and psychological disturbance. Quality of life is substantially affected. Clinicians should actively explore their patients' psychological adjustment to enable early recognition and treatment of these disorders.

Family grief therapy: a preliminary account of a new model to promote healthy family functioning during palliative care and bereavement.

The family is usually the primary provider of care for the terminally ill patient with cancer or other serious progressive illness. The way in which such a family functions is a major determinant of psychological well-being for its members. Through screening with the Family Relationships Index (FRI) (Moos and Moos, 1981), dysfunctional families and those at risk can be identified, and then helped to achieve better family functioning, thus improving psychosocial outcome of their grief. In this paper, we describe the techniques and themes involved in the application of our empirically developed model of family grief therapy, designed as a preventive intervention for use in the setting of palliative care and bereavement.

Family coping and bereavement outcome.

Using a three-phase longitudinal design, the bereavement of 115 adult Australian families following the death of a parent from cancer was studied. The cohort comprised 115 spouses and 153 offspring: 670 individual responses were obtained. A range of psychosocial variables was studied through a semistructured interview covering the experience of the deceased's illness, death and funeral, spousal health, family coping, sources of support, use of ritual and completion of estate duties. Bereavement outcome was measured by standardized questionnaires of the intensity of grief (Bereavement Phenomenology Questionnaire), depression (Beck Depression Inventory), psychological distress (Brief Symptom Inventory) and social adjustment (Social Adjustment Scale). Those psychosocial variables found to be significantly correlated with bereavement outcome were entered into best sub-set regression analyses. Family coping was the most consistent correlate of bereavement outcome in these regression analyses, which accounted for up to 38% of the variance in grief, 64% in distress, 53% in depression and 46% in social adjustment. The nature of family functioning is a key aspect of social support in influencing the outcome of bereavement.

Cognitive-existential group therapy for patients with primary breast cancer--techniques and themes.

We describe a model of cognitive-existential group therapy designed to be integrated over 6 months with regimens of adjuvant chemotherapy given as conventional medical treatment to breast cancer patients with stage 1 and 2 disease. Our broad therapy goals are for members to develop a supportive network, work through grief over losses, improve problem solving and develop cognitive strategies to maximise coping, enhance a sense of mastery over life and re-evaluate priorities for the future. Specific group themes include death anxiety, fear of recurrence, living with uncertainty, understanding treatment with chemotherapy, radiotherapy and hormone regimens, the collaborative doctor-patient relationship, body and self image, sexuality, relationships with partner, friends and family, surgical reconstruction, life style effects and future goals. Active coping skills are developed through teaching formal problem solving and cognitive restructuring of automatic negative thoughts. Technical aspects of the therapy are discussed.