Investigación cualitativa en Cuidados Paliativos. Un recorrido por los enfoques más habituales

The use of qualitative research in Palliative Care (PC) is increasing, probably because PC and qualitative methodology have many things in common. Both focus on the person and his or her environment, and they are particularly interested in human experience. The aim of this paper is to present some of the most often used qualitative research approaches in health science, providing examples of PC studies. The aim is to help beginners to explore the possible approaches that they could use to carry out research in PC. The armchair walk-through exercise, which helps to specify key aspects in research, is developed for each of the approaches: ethnography, phenomenology, personal narrative, and grounded theory. Becoming familiar with qualitative methodology and some of the approaches will help PC health professionals to raise new questions and address new challenges with rigorous research.La utilización de la investigación cualitativa en Cuidados Paliativos (CP) está en auge, quizás porque tienen muchos aspectos en común. Ambos se centran en la persona y su entorno y están especialmente interesados en la experiencia humana. El objetivo de este artículo es presentar algunos de los enfoques más frecuentemente utilizados en las ciencias de la salud, proporcionando ejemplos de estudios de CP. Esto con el fin de ayudar a quienes se están iniciando en la investigación cualitativa a explorar los posibles enfoques que podrían utilizar para realizar investigación en CP. A través del ejercicio «armchair walkthrough», se concretan los aspectos clave de un proyecto de investigación, considerando los distintos enfoques: la etnografía, la fenomenología, la narrativa y la teoría fundamentada. Familiarizarse con la metodología cualitativa y algunos de los enfoques ayudará a los profesionales de CP a plantear nuevas preguntas y retos con investigación rigurosa

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care

ICS. Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Results: Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, relationships established (63/77 documents)¿ b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement¿ c) Messages of support (45/77) related to the need of resources provided

What does the media say about palliative care? A descriptive study of news coverage in written media in Spain

INTRODUCTION: The goal of palliative care (PC) is to improve the quality of life of terminal stage patients and their families. The subject frequently appears in the mass-media and this helps create a socially accepted identity. The aim of this study is to describe and analyse PC related news items appeared in the Spanish written media. METHODOLOGY: A descriptive cross-sectional study was designed. Considering diffusion, scope and the range in editorial policy criteria, four printed newspapers (PN) were selected, together with four exclusively digital media sources (DM). Through Mynews, a newspaper content depository, and the search tool for each DM website, articles published between 2009 and 2014 which included the terms "palliative care" and "palliative medicine" were sought. A questionnaire was created to characterise each article identified and a descriptive analysis was undertaken. RESULTS: A total of 627 articles were identified, of which 359 (57%) were published in PN (42% in the printed editions -PE- 16% in their online editions -OE-) and 268 (43%) in DM. In general, they appeared mainly in sections concerning Health (23%), Culture and Society (18%) and General/Home News (15%). In PE, just 2% were found in the Health section and nearly 70% in Culture and Society and General/Home News. Most of the articles were informative in nature and contained socio-political messages (90%). Statements by PC professionals were found in 35% of the articles and by politicians in 32%. The most frequent content was related to facing end of life (74%) and patient quality of life (70%). CONCLUSIONS: The Spanish written media reflects the socio-political interest aroused by PC. Nevertheless, messages circulating about PC do not describe professional practice, or the contribution of the same for patients. Content more in line with the clinical practice might help contribute to the development of this new area of medicine

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 countries

BACKGROUND:The evolution of the provision of palliative care specialised services is important for planning and evaluation. AIM: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. DESIGN AND SETTING: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. RESULTS: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. CONCLUSION: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population

The updating of clinical practice guidelines: insights from an international survey

BACKGROUND: Clinical practice guidelines (CPGs) have become increasingly popular, and the methodology to develop guidelines has evolved enormously. However, little attention has been given to the updating process, in contrast to the appraisal of the available literature. We conducted an international survey to identify current practices in CPG updating and explored the need to standardize and improve the methods. METHODS: We developed a questionnaire (28 items) based on a review of the existing literature about guideline updating and expert comments. We carried out the survey between March and July 2009, and it was sent by email to 106 institutions: 69 members of the Guidelines International Network who declared that they developed CPGs; 30 institutions included in the U.S. National Guideline Clearinghouse database that published more than 20 CPGs; and 7 institutions selected by an expert committee. RESULTS: Forty-four institutions answered the questionnaire (42% response rate). In the final analysis, 39 completed questionnaires were included. Thirty-six institutions (92%) reported that they update their guidelines. Thirty-one institutions (86%) have a formal procedure for updating their guidelines, and 19 (53%) have a formal procedure for deciding when a guideline becomes out of date. Institutions describe the process as moderately rigorous (36%) or acknowledge that it could certainly be more rigorous (36%). Twenty-two institutions (61%) alert guideline users on their website when a guideline is older than three to five years or when there is a risk of being outdated. Twenty-five institutions (64%) support the concept of "living guidelines," which are continuously monitored and updated. Eighteen institutions (46%) have plans to design a protocol to improve their guideline-updating process, and 21 (54%) are willing to share resources with other organizations. CONCLUSIONS: Our study is the first to describe the process of updating CPGs among prominent guideline institutions across the world, providing a comprehensive picture of guideline updating. There is an urgent need to develop rigorous international standards for this process and to minimize duplication of effort internationally

‘Dignity therapy’, a promising intervention in palliative care: A comprehensive systematic literature review

Background: Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life. Little is known about its effect. Aim: To analyse the outcomes of dignity therapy in patients with advanced life-threatening diseases. Design: Systematic review was conducted. Three authors extracted data of the articles and evaluated quality using Critical Appraisal Skills Programme. Data were synthesized, considering study objectives. Data sources: PubMed, CINAHL, Cochrane Library and PsycINFO. The years searched were 2002 (year of dignity therapy development) to January 2016. `Dignity therapy¿ was used as search term. Studies with patients with advanced life-threatening diseases were included. Results: Of 121 studies, 28 were included. Quality of studies is high. Results were grouped into effectiveness, satisfaction, suitability and feasibility, and adaptability to different diseases and cultures. Two of five randomized control trials applied dignity therapy to patients with high levels of baseline psychological distress. One showed statistically significant decrease on patients¿ anxiety and depression scores over time. The other showed statistical decrease on anxiety scores pre¿post dignity therapy, not on depression. Nonrandomized studies suggested statistically significant improvements in existential and psychosocial measurements. Patients, relatives and professionals perceived it improved end-of-life experience. Conclusion: Evidence suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy

Integrated palliative care in the Spanish context: a systematic review of the literature

Abstract Background: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. Methods: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. Results: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel’s tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. Conclusions: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations

La relación enfermera-paciente con cáncer avanzado y terminal: una meta-etnografía

Errasti-Ibarrondo, B., Pérez, M., Arantzamendi, M., et al. “La relación enfermera-paciente con cáncer avanzado y terminal: una meta-etnografía” en X Congreso Nacional de la Sociedad Española de Cuidados Paliativos, celebrado en Madrid (España) del 13 al 15 de noviembre de 201

The importance of nurses' way of caring: the experience of patients' with advanced and terminal cancer

Errasti-Ibarrondo, B., Pérez, M., Arantzamendi, M., et al. “The importance of nurses' way of caring: the experience of patients' with advanced and terminal cancer” en 14th Congress of the European Association for Palliative Care, celebrado en Copenhague (Dinamarca) del 8 al 10 de mayo de 201

Development of an activity disease score in patients with uveitis (UVEDAI)

To develop a disease activity index for patients with uveitis (UVEDAI) encompassing the relevant domains of disease activity considered important among experts in this field. The steps for designing UVEDAI were: (a) Defining the construct and establishing the domains through a formal judgment of experts, (b) A two-round Delphi study with a panel of 15 experts to determine the relevant items, (c) Selection of items: A logistic regression model was developed that set ocular inflammatory activity as the dependent variable. The construct "uveitis inflammatory activity" was defined as any intraocular inflammation that included external structures (cornea) in addition to uvea. Seven domains and 15 items were identified: best-corrected visual acuity, inflammation of the anterior chamber (anterior chamber cells, hypopyon, the presence of fibrin, active posterior keratic precipitates and iris nodules), intraocular pressure, inflammation of the vitreous cavity (vitreous haze, snowballs and snowbanks), central macular edema, inflammation of the posterior pole (the presence and number of choroidal/retinal lesions, vascular inflammation and papillitis), and global assessment from both (patient and physician). From all the variables studied in the multivariate model, anterior chamber cell grade, vitreous haze, central macular edema, inflammatory vessel sheathing, papillitis, choroidal/retinal lesions and patient evaluation were included in UVEDAI. UVEDAI is an index designed to assess the global ocular inflammatory activity in patients with uveitis. It might prove worthwhile to motorize the activity of this extraarticular manifestation of some rheumatic diseases