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.

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.

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.

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.

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.

The Melbourne Family Grief Study, II: Psychosocial morbidity and grief in bereaved families.

OBJECTIVE: The aim of this study was to describe the intensity of grief, the psychosocial morbidity, and the coping patterns in members of families classified according to a typology of family functioning comprising supportive, conflict-resolving, intermediate, sullen, and hostile classes. METHOD: One hundred fifteen families were assessed longitudinally 6 weeks (time 1), 6 months (time 2), and 13 months (time 3) after the death of a parent (constituting 670 individual responses) on measures of grief intensity, psychological state, social adjustment, and family coping. A previously described typology of perceptions of family functioning was applied. Repeated measures multivariate analysis of variance based on both individuals and families and post hoc comparisons of significant results were undertaken. RESULTS: Sullen families displayed the most intense grief and the most severe psychosocial morbidity. Well-functioning families (supportive and conflict-resolving) resolved their grief and adjusted more adaptively than their dysfunctional counterparts (intermediate, sullen, and hostile families). There were no cluster-by-time interactions. The clusters accounted for 15.7% of the variance in depression (Beck Depression Inventory) and 27.9% of the variance in social functioning (Social Adjustment Scale). Well-functioning families used more family coping strategies (Family Crisis Oriented Personal Evaluation Scales). CONCLUSIONS: More intense grief and greater psychosocial morbidity are found in sullen, hostile, and intermediate bereaved families than in the more adaptive supportive and conflict-resolving types. At-risk families are identifiable and could be treated preventively to reduce morbidity.

The Melbourne Family Grief Study, I: Perceptions of family functioning in bereavement.

OBJECTIVE: The aim of this study was to identify patterns of family functioning in adult families after the death of a parent. METHOD: One hundred fifteen families completed measures of family functioning, grief, psychological state, and social adjustment 6 weeks (time 1), 6 months (time 2), and 13 months (time 3) after the death of a parent (a total of 670 individual responses). Cluster analytic methods were applied to develop a typology of perceptions of family functioning during bereavement. RESULTS: Five types of families emerged from dimensions of cohesiveness, conflict, and expressiveness on the Family Environment Scale. Thirty-six percent of the families were considered supportive because of their high cohesiveness, and another 23% resolved conflict effectively. Two types were dysfunctional: hostile families, distinguished by high conflict, low cohesiveness, and poor expressiveness, and sullen families, who had more moderate limitations in these three areas; they declined in frequency from 30% at time 1 to 15% at time 3. The remaining type (26%), termed intermediate, exhibited midrange cohesiveness, low control, and low achievement orientation. The typology at time 1 predicted typologies at time 2 and time 3. There were no age or gender differences among the family types, but offspring, as compared with spouses, were overrepresented in the hostile families. CONCLUSIONS: Family types can be identified, allowing at-risk families to be helped to prevent complications of grief. Screening with the family relationship index of the Family Environment Scale would facilitate such a family-centered approach.

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.

Demoralization syndrome--a relevant psychiatric diagnosis for palliative care.

Hopelessness, loss of meaning, and existential distress are proposed as the core features of the diagnostic category of demoralization syndrome. This syndrome can be differentiated from depression and is recognizable in palliative care settings. It is associated with chronic medical illness, disability, bodily disfigurement, fear of loss of dignity, social isolation, and--where there is a subjective sense of incompetence--feelings of greater dependency on others or the perception of being a burden. Because of the sense of impotence or helplessness, those with the syndrome predictably progress to a desire to die or to commit suicide. A treatment approach is described which has the potential to alleviate the distress caused by this syndrome. Overall, demoralization syndrome has satisfactory face, descriptive, predictive, construct, and divergent validity, suggesting its utility as a diagnostic category in palliative care.

Managing anger in palliative care.

Anger is a commonly encountered emotion in the cancer setting. Understanding its origin is vital but the practitioner needs to facilitate more than the ventilation of feelings; some change in attitude, the provision of social support and the promotion of adaptive coping need to be generated. The perceived unfairness of illness and death commonly underpins anger in the patient with cancer. Management strategies are discussed.

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.

Reducing fear in cancer survivors.

As more patients come to survive cancer, controlling their fear of its recurrence and minimising anxiety are important in re-establishing their quality of life. Combinations of therapies that acknowledge existential realities, encourage expression of feelings, identify irrational thoughts and promote self-helping behaviours are needed.

Family-based grief counselling.

The family constitutes the key social group involved with mourning. A model of family response patterns to bereavement is presented that contrasts the adaptive family's response with maladaptive patterns that are avoidant, distorted, inflexible or that amplify grief. Guidelines in working with these families are discussed.

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.

Demoralisation: its impact on informed consent and medical care.

Demoralisation, a mental state characterised by hopelessness and meaninglessness, can be differentiated from depression in that demoralised patients can enjoy the present, their lack of hope being confined to the future. However, like severe depression, demoralisation can interfere with a person's capacity to give informed consent. Doctors and other health professionals are also subject to demoralisation, which influences medical care.