Patients Suffering from a Chronic, Irreversible Illness: A Novel Study on the Psychological Intervention out of the Hospital

Objective: Patients with chronic, untreatable diseases have emotional needs that are often unaddressed by conventional care services within the healthcare systems. The situation of patients with idiopathic pulmonary fibrosis (IPF) is paradigmatic as there are few, if any, studies focusing on psychological interventions for these patients. This chapter describes a study that identifies and quantifies emotional distress, quality of life, spirituality, and key dimensions of health-related well-being after brief psychotherapy treatments at an outpatient clinic.

Espiritualidad en atención paliativa: Evidencias sobre la intervención con counselling

ResumenLas necesidades espirituales, cuando son elaboradas de forma efectiva, ayudarán a la persona al final de la vida a encontrar significado, mantener la esperanza y aceptar la muerte. El counselling es una de las terapias más utilizadas para mejorar estas necesidades. El objetivo del presente trabajo es ofrecer evidencia sobre la eficacia de esta terapia para la mejora de la espiritualidad de los pacientes atendidos en diversos dispositivos de salud. Para conseguirlo, se llevó a cabo una intervención de tres semanas en 131 pacientes de atención domiciliaria y hospitalizados. Tenían una edad media de 70.61 años (DT = 11.17). El 51.1% eran hombres. Se evaluó la espiritualidad de los pacie…

Espiritualidad en atención paliativa: evidencias sobre la intervención con counselling

Las necesidades espirituales, cuando son elaboradas de forma efectiva, ayudarán a la persona al final de la vida a encontrar significado, mantener la esperanza y aceptar la muerte. El counselling es una de las terapias más utilizadas para mejorar estas necesidades. El objetivo del presente trabajo es ofrecer evidencia sobre la eficacia de esta terapia para la mejora de la espiritualidad de los pacientes atendidos en diversos dispositivos de salud. Para conseguirlo, se llevó a cabo una intervención de tres semanas en 131 pacientes de atención domiciliaria y hospitalizados. Tenían una edad media de 70.61 años (DT = 11.17). El 51.1% eran hombres. Se evaluó la espiritualidad de los pacientes an…

Psychological Profile of Patients Diagnosed With Idiopathic Pulmonary Fibrosis

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

ABSTRACTObjective: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 …

Intervenciones psicológicas en espiritualidad en cuidados paliativos: una revisión sistemática

Resumen Contexto La espiritualidad puede entenderse como una condicion fundamental del sentido de la persona. Se incluye dentro de los objetivos fundamentales de trabajo de los cuidados paliativos, considerandose que la calidad de vida del paciente no puede favorecerse en su conjunto si no se aborda la dimension espiritual. Objetivo El objetivo de esta revision sistematica es sintetizar la evidencia cientifica mas reciente en espiritualidad en pacientes paliativos con enfermedad avanzada, atendiendo sobre todo a que tipo de intervencion que contemple la dimension espiritual se ha llevado a cabo con ellos. Se recogen datos sobre el tipo de estudio y resultados estadisticos encontrados en cua…

Demoralization Scale in Spanish-Speaking Palliative Care Patients.

Abstract 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 confirmat…

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 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 ca…

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

ABSTRACTObjective: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 confirmator…

Development and Validation of Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) in Home Respiratory Therapies: Oxygen Therapy, CPAP Treatment, Mechanical Ventilation, and Aerosol Therapy

Introduction: Home respiratory therapies (HRT) are treatments aimed at diseases that are generally chronic and that have a significant impact on the biopsychosocial aspects of patients’ lives. No validated patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) are available to assess the impact of these treatments on quality of life (QoL) in HRT. The objective of this work was to identify and validate PROMs and PREMs in HRT. Methods: The process was divided into 5 stages: review of the literature, patient interviews, qualitative validation workshops, cognitive validation, and psychometric validation. For the identification of PROM and PREM, consensus techni…

Síndrome de desmoralización como alternativa diagnóstica al estado de ánimo deprimido en pacientes paliativos

The emotional state of palliative patients is one of the main aims in their professional attention. Several authors have approach this matter using depression definitions as defined for the general population. There are also many expert professional opinions and research data pointing to the need for adequate research at the patient’s end of life situation. Perhaps one of the most interesting ideas is that one initia­lly expressed by Frank and developed by Kis­sanne et al., suggesting differentiation between depression and demoralization. Following this line of thought, demoralization would more accurately reflect the situation observed in these patients, allows a better differential diagno…

Development and Validation of the OSA-CPAP Perceived Competence Evaluation Interview

Continuous positive airway pressure (CPAP) is one of the most common therapies for Obstructive Sleep Apnea (OSA). We present a brief, patient-reported outcome measure used to assess patients' levels of adherence with CPAP treatment.A questionnaire was developed based on academic literature. We qualitatively tested a pool of 18 items. It was tested in a sample of 174 patients from the Hospital La Princesa. Next, 1021 patients from Catalonia were evaluated.5 items were removed. Nominal groups referred to three areas: general knowledge about OSA and its risks; CPAP treatment information and expectations; CPAP use, monitoring, and confidence with its use. The 13 retained items maintained the sa…

Estudio comparativo de la eficacia del counselling y de la terapia de la dignidad en pacientes paliativos

Resumen Objetivo Existen multiples trabajos que contemplan el conjunto de las necesidades de los pacientes al final de la vida, contando con propuestas de modelos integrales para una intervencion terapeutica paliativa. La metodologia mas comun que aborda estas necesidades es la intervencion de counselling, aunque recientemente tambien ha crecido el uso internacional de la «terapia de la dignidad». Este estudio tiene como objetivo identificar y cuantificar diferencias en terminos de distres emocional, calidad de vida y preservacion de la dignidad tras el tratamiento con estos 2 tipos de intervenciones. Metodo Diseno cuasi-experimental en la Unidad de Hospitalizacion a Domicilio (UHD) del Hos…

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

AbstractObjective: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 Dig…