The Short Demoralization Scale (SDS): A new tool to appraise demoralization in palliative care patients.

OBJECTIVE: The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS). METHOD: We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS). RESULTS: The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI 95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument. SIGNIFICANCE OF RESULTS: The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS).

OBJECTIVE: This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity. METHOD: Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support. RESULTS: After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale. SIGNIFICANCE OF RESULTS: The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Comparing counseling and dignity therapies in home care patients: A pilot study.

OBJECTIVE: Several studies have successfully tested psychosocial interventions in palliative care patients. Counseling is the technique most often employed. Dignity therapy (DT) has recently emerged as a tool that can be utilized to address patients' needs at the end of life. The aims of our study were to examine the effects of DT and counseling and to offer useful information that could be put into practice to better meet patients' needs. METHOD: We developed a pilot randomized controlled trial at the Home Care Unit of the General University Hospital of Valencia (Spain). Some 70 patients were assigned to two therapy groups. The measurement instruments employed included the Patient Dignity Inventory (PDI), the Hospital Anxiety and Depression Scale (HADS), the Brief Resilient Coping Scale (BRCS), the GES Questionnaire, the Duke-UNC-11 Functional Social Support Questionnaire, and two items from the EORTC Quality of Life C30 Questionnaire (EORTC-QLQ-C30). RESULTS: The results of repeated-measures t tests showed statistically significant differences with respect to the dimensions of dignity, anxiety, spirituality, and quality of life for both groups. However, depression increased in the DT group after the intervention, and there were no differences with respect to resilience. Therapy in the counseling group did not negatively affect depression, and resilience did improve. When post-intervention differences between groups were calculated, statistically significant differences in anxiety were found, with lower scores in the counseling group (t(68) = -2.341, p = 0.022, d = 0.560). SIGNIFICANCE OF RESULTS: Our study provided evidence for the efficacy of dignity therapy and counseling in improving the well-being of palliative home care patients, and it found better results in the counseling therapy group with respect to depression, resilience, and anxiety.

Responding to the Spiritual Needs of Palliative Care Patients: A Randomized Controlled Trial to Test the Effectiveness of the Kibo Therapeutic Interview.

CONTEXT: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so. OBJECTIVES: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience. METHODS: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered. RESULTS: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group. CONCLUSION: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals. CLINICAL TRIAL REGISTRATION NUMBER: https://clinicaltrials.gov/ct2/show/ Identifier NCT03995095.

Proper information during the surgical decision-making process lowers the anxiety of patients with high-grade gliomas.

PURPOSE: We aim to analyse the relationship between the quality of information during the decision-making process regarding surgery to treat high-grade gliomas and the level of anxiety of the patients. METHODS: This is a transversal, descriptive and correlational study on 26 patients with a clinical and radiological diagnosis of high-grade glioma. They scored the quality (in terms of comprehension and satisfaction) of information received about the treatment options and prognosis during the surgical decision-making process, and the Hospital Anxiety and Depression Scale questionnaire (HADS) was applied immediately afterward. RESULTS: Lower levels of anxiety were observed in patients who showed a desire to receive information regarding their illness, those with a higher degree of comprehension, and those with a higher level of satisfaction with the information provided. CONCLUSIONS: An improvement in the communication process contributes to a decrease in the levels of anxiety, and consequently to enhancement of the well-being of these patients.

Frail elderly with and without cognitive impairment at the end of life: Their emotional state and the wellbeing of their family caregivers.

PURPOSE OF THE STUDY: (1) To identify the main predictors of the emotional state of the frail elderly at the end-of-life and that of their primary family caregivers, taking into consideration the presence/absence of significant cognitive impairment in the patient and (2) to analyse the relationship between the emotional state of the patient and that of their primary family caregiver. METHODS: Our study is cross-sectional. 85 frail elderly patients at the end-of-life and their primary family caregivers participated. Information on the following aspects was collected: (1) From the patients: Socio-demographics, Functional independence, and Cognitive and Emotional state; (2) From the caregivers: Socio-demographics, Emotional state and Overburden (according to Zarit Scale). Descriptive, correlational and linear regression analyses were computed using SPSS. RESULTS: The models that best predict the observed variance in the emotional state of patients (with or without significant cognitive impairment) include the same variables: functional independence of the patient and caregiver's overburden. Similarly, the models that best predict the observed variance in the emotional state of family caregivers include: cognitive state of the patient and caregiver's overburden. IMPLICATIONS: The overburden of the family caregiver stands out as a key factor in the reduction of the emotional distress of frail elder patients -whether or not they present significant cognitive impairment- and that of their family caregivers. Our results suggest that reducing overburden of the family caregiver may also reduce the emotional distress of the patient and that of their family caregiver.

Demoralization Scale in Spanish-Speaking Palliative Care Patients.

CONTEXT: Among the approaches to the demoralization syndrome, the one proposed by Kissane et al. is prevalent in the literature. These authors developed the Demoralization Scale (DS) to assess emotional distress, conceived as demoralization. OBJECTIVES: To present the Spanish adaptation of the Demoralization Scale in palliative care patients, with a new and more comprehensive approach to its factorial structure. METHODS: A cross-sectional study was carried out in 226 Spanish palliative care patients in three different settings: hospital, home care unit, and continued care unit. Outcome measures included the DS and the Hospital Anxiety and Depression Scale. Analyses comprised confirmatory factor analyses to test the original, German, and Irish structure of the DS, exploratory structural equation modeling (ESEM), estimations of internal consistency, and multivariate analyses of variance for criterion-related validity. RESULTS: The confirmatory factor analyses showed inappropriate fit for the previous structures when studied in the Spanish version of the DS. With ESEM, the best fitting structure was the five-factor solution, without item 18. Reliability results offered good estimations of internal consistency for all the dimensions except for sense of failure. Cronbach alpha coefficients were appropriate for the dimensions of loss of meaning (0.86), helplessness (0.79), disheartenment (0.88), and dysphoria (0.80), but low reliability was found for sense of failure (0.62). Convergent and discriminant validity showed positive correlations between demoralization, anxiety, and depression. Patients with higher levels of anxiety had higher scores on every dimension of demoralization, and those with higher levels of depression had higher scores on loss of meaning, disheartenment, and sense of failure, but not on dysphoria or helplessness. CONCLUSION: The Spanish adaptation of the DS has shown appropriate psychometric properties. It has been useful to differentiate between depression and the demoralization syndrome, pointing to helplessness and dysphoria as unique characteristics of demoralized palliative care patients.

Effect of a short-term psychological intervention on the anxiety and depression of amyotrophic lateral sclerosis patients.

This study evaluated the effectiveness of a psychological intervention in amyotrophic lateral sclerosis patients, consisting of four semi-structured sessions of cognitive behavioural therapy combined with counselling techniques. An intervention group and a control group were established. The Hospital Anxiety and Depression Scale was used to assess levels of anxiety and depression. In total, fifty-four patients took part. Prior to the intervention, the intervention group displayed rates of 63.3 and 36.7 per cent for anxiety and depression, respectively, falling to 16.7 and 10.0 per cent afterwards. The psychological intervention demonstrated potential for the reduction of levels of anxiety and depression in amyotrophic lateral sclerosis patients.

Spirituality in patients with advanced illness: The role of symptom control, resilience and social network.

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by palliative care teams. Statistically significant correlations were found between some dimensions of spirituality and poor symptomatic control, resiliency, and social support. In the structural model, three variables predicted spirituality: having physical symptoms as the main source of discomfort, resiliency, and social support. This work highlights the relevance of the relationships among spirituality and other aspects of the patient at the end of life.

Development and validation of a new tool for the assessment and spiritual care of palliative care patients.

CONTEXT: Spiritual assessment tools and interventions based on holistic approaches are needed to promote healing. Such tools must be adapted to the wide cultural backgrounds of contemporary Western society. OBJECTIVES: To develop and validate a new brief measure, simultaneously featuring clinical applicability and adequate psychometric properties. The tool uses six initial questions to establish a climate of trust with patients before they complete an eight-item, five-point Likert scale. The questionnaire is based on a model of spirituality generated by the Spanish Society of Palliative Care (SECPAL) Task Force on Spiritual Care (Grupo de Espiritualidad de la SECPAL), which aims to recognize, share, and assess the spiritual resources and needs of palliative care patients. METHODS: Multidisciplinary professionals from 15 palliative care teams across Spain interviewed 108 patients using the Grupo de Espiritualidad de la SECPAL questionnaire. Confirmatory factor analysis techniques were used to study the new tool factor structure and reliability. Additionally, concurrent criterion validity coefficients were estimated considering spiritual well-being, anxiety, depression, resilience, and symptoms. Descriptive statistics on questionnaire applicability were reported. RESULTS: Analyses supported a three-factor structure (intrapersonal, interpersonal, transpersonal) with an underlying second-order factor representing a spirituality construct. Adequate reliability results and evidence for construct validity were obtained. CONCLUSION: The new questionnaire, based on empirical research and bedside experience, showed good psychometric properties and clinical applicability.

Grief support provided to caregivers of palliative care patients in Spain.

Grief support for relatives of patients in palliative care is recognized as a fundamental practice within palliative medicine. The aim of this research was to determine the nature and extent of grief support programs offered to relatives of patients in palliative care in Spain. A postal survey was carried out among members of the Spanish Society of Palliative Care. The members' names were obtained through the Society's 2000 Directory, which lists 160 different teams, of which 50% answered a questionnaire made up of 34 questions, some open-ended and others multiple choice. Results show that 88.6% of the services include grief support, that mainly emotional and one-to-one care is provided (92.4 and 89.9%, respectively), and that the number of psychologists and social workers in each team is limited. The risk factors most commonly taken into account by professionals are: absence of family support (36.92%) and the bereaved's case history (21.54%); while the most widely used diagnostic criteria for complicated bereavement are blame and depression (12.5 and 11.36%). In conclusion, it can be seen that bereavement services are not completely consolidated in Spain and there is a need for a greater variety of intervention strategies.