Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties.

BACKGROUND: Family caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools. AIM: This study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC). DESIGN: Multicentre, cross-sectional study. SETTINGS/PARTICIPANTS: Family caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA). RESULTS: 138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach's alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale. CONCLUSIONS: The DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

The psychological experience of pediatric oncology patients facing life-threatening situations: A systematic review with narrative synthesis.

OBJECTIVE: The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs. METHODS: The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the "Critical Appraisal Skills Programme." RESULTS: A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty. SIGNIFICANCE OF RESULTS: The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients' subjectivity.

Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol.

INTRODUCTION: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale.

OBJECTIVE: The goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context. METHOD: The scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer. RESULT: All respondents evaluated the tool as "excellent." In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28. SIGNIFICANCE OF RESULTS: To provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.

Effectiveness of Psychosocial Interventions in Complex Palliative Care Patients: A Quasi-Experimental, Prospective, Multicenter Study.

OBJECTIVE: To determine whether specific psychosocial interventions can ease discomfort in palliative care (PC) patients, particularly in those with high levels of pain or emotional distress. METHODS: Changes in the psychological parameters of 8333 patients were assessed in a quasi-experimental, prospective, multicenter, single group pretest/post-test study. Psychosocial care was delivered by 29 psychosocial care teams (PSTs; 137 professionals). Pre- and post-intervention changes in these variables were assessed: mood, anxiety, and emotional distress. Patients were classified as complex, when presented with high levels of anxiety, mood, suffering (or perception of time as slow), and distress (or unease, or discomfort), or noncomplex. These groups were compared to assess changes in suffering-related parameters from baseline. RESULTS: Psychosocial interventions reduced patients' suffering. These interventions were more effective in complex patients. CONCLUSIONS: After successive psychosocial interventions, the level of suffering in complex patients decreased until close to parity with noncomplex patients, suggesting that patients with major complexity could benefit most from specific psychosocial treatment. These findings support the importance of assessing and treating patients' psychosocial needs.

Manual para la atención psicosocial y espiritual a personas con enfermedades avanzadas: Intervención psicológica y espiritual

Manual que pretende servir de guía a los profesionales de la salud que se dedican a la atención paliativa y, en particular, a los que ejercen la psicología y que resulte una herramienta útil para todas aquellas personas que, desde la praxis profesional, intentan aliviar el sufrimiento y promover el bienestar de pacientes y familiares, previniendo a la par el desgaste emocional de los profesionales y optimizando su competencia. Contiene: Psicología de la salud y cuidados paliativos, muerte, cultura y cuidados paliativos, breve historia de la psicología paliativa en España, fundamentos antropológicos, éticos y relacionales de la intervención psicológica en cuidados paliativos, situación de enfermedad avanzada. Identificación de los pacientes oncológicos y no oncológicos y transiciones al final de la vida, modelos de encuadre en cuidados paliativos, evaluación psicológica en cuidados paliativos, modelos de intervención psicológica específicos al final de la vida, competencias del psicólogo, situaciones clínicas psicosociales prevalentes. Intervención psicológica, información y comunicación, familia y entorno afectivo, duelo, dimensión ética, espiritualidad, atención paliativa pediátrica. Consideraciones especiales, cuidados paliativos no oncológicos. Consideraciones especiales, equipo de cuidados paliativos y burnout.

Enhancing psychosocial and spiritual palliative care: Four-year results of the program of comprehensive care for people with advanced illnesses and their families in Spain.

OBJECTIVE: We aimed to describe the overall quantitative and qualitative results of a "La Caixa" Foundation and World Health Organization Collaborating Center Program entitled "Comprehensive Care for Patients with Advanced Illnesses and their Families" after four years of experience. METHOD: Qualitative and quantitative methods were employed to assess the program. Quasiexperimental, prospective, multicenter, single-group, and pretest/posttest methods were utilized to assess the quantitative data. The effectiveness of psychosocial interventions was assessed at baseline (visit 1) and after four follow-up visits. The following dimensions were assessed: mood state, discomfort, anxiety, degree of adjustment or adaptation to disease, and suffering. We also assessed the four dimensions of the spiritual pain scale: faith or spiritual beliefs, valuable faith or spiritual beliefs, meaning in life, and peace of mind/forgiveness. Qualitative analyses were performed via surveys to evaluate stakeholder satisfaction. RESULTS: We built 29 psychosocial support teams involving 133 professionals-mainly psychologists and social workers. During the study period, 8,964 patients and 11,810 family members attended. Significant improvements were observed in the psychosocial and spiritual dimensions assessed. Patients, family members, and stakeholders all showed high levels of satisfaction. SIGNIFICANCE OF RESULTS: This model of psychosocial care could serve as an example for other countries that wish to improve psychosocial and spiritual support. Our results confirm that specific psychosocial interventions delivered by well-trained experts can help to ease suffering and discomfort in end-of-life and palliative care patients, particularly those with high levels of pain or emotional distress.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

BACKGROUND: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. OBJECTIVE: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. RESULTS: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. CONCLUSIONS: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.