Life at the end of life: beliefs about individual life after death and "good death" models - a qualitative study

BACKGROUND: Different ideas of "good death" may influence the effectiveness of end-of-life care in patients with different ethos. This study aimed to identify the influence of believing in individual life after death on "good death" models. METHODS: Semi structured-interview to 8 persons, 4 believers and 4 non-believers in individual life after death from the general Italian population. Analysis of the transcribed text according to the method suggested by Mc Cracken. RESULTS: The analysis has shown a diverse and coherent conceptualization of death according to whether the subjects believe or not in individual life after death. Believers, for whom death marks the passage to a new dimension, prefer to be unaware of dying, while non-believers, for whom death is the end of the individual, prefer to be conscious until the very end of life. However some important aspects in common have been identified, i.e. having close people nearby, receiving assistance from experts, or the preference for a soft atmosphere around the dying person. CONCLUSION: There are aspects in common and aspects in contrast between believers and non-believers in individual life after death: while sharing many aspects of what a "good death" ought to be, they have opposite stands on being aware of dying. A plurality of models should be foreseen, accepting, in this case, their practical and theoretical implications

An increasing number of qualitative research papers in oncology and palliative care: does it mean a thorough development of the methodology of research?

BACKGROUND: In the second half of the nineties, a scientific debate about the usefulness of qualitative research in medicine began in the main medical journals as well as the amount of "qualitative" papers published on peer reviewed journals has noticeably increased during these last years. Nevertheless the label of qualitative methodology has been assigned to an heterogeneous collection of studies. Some of them show a complete awareness of the specificity of this kind of research, while others are still largely influenced by the quantitative paradigm prevailing in the medical field. The concern with the rigour and credibility of qualitative methods has lead to the development of a number of checklist for assessing qualitative research. The purposes of this review were to describe the quality of the development of qualitative research in the medical field, focusing on oncology and palliative care, and to discuss the applicability of a descriptive checklist. METHODS: A review was conducted on Medline and PsycINFO databases. On the basis of their abstract, papers found have been classified considering: publication year, kind of journal, paper type, data gathering method, sample size and declared methodological approach. A sub sample of the previous papers was than selected and their methodological characteristics were evaluated based on a descriptive checklist. RESULTS: 351 abstracts and 26 full papers were analysed. An increase over time in the number of qualitative studies is evident. While most of the papers before 1999 were published on nursing journals (43%), afterwards also medical journals were largely represented. Psychological journals increased from 7% to 12%. The 22% of studies used a sample size lower than 15 and the 15% did not specify the sample size in the abstract. The methodological approach was also often not specified and the percentage increased in the second time period (from 73% to 80%). Grounded theory was the most employed methodological approach while phenomenology shows a decrease. Interview remains the most used data gathering method in both periods, even if it shows a 10% reductions, while focus group and multiple methods application both increase to 12%. The use of the descriptive checklist on the full text of the 26 papers shows that all the items present a larger percentage of satisfaction after 1 January 1999 than it was for the paper published before 1999. There seems to be two different types of quality criteria: specific and unspecific. The first ones mainly refer to qualitative paradigm (such as the relationship with the subject of research or evidence about how subjects perceived the research) and they are often not satisfied. In contrast unspecific criteria (such as the connection to an existing body of knowledge or systematic data gathering) which are mainly shared with the quantitative paradigm are more frequently satisfied. CONCLUSIONS: In oncology and palliative care the publication of qualitative studies increased during the nineties, reaching its peak in around 2000. The use of descriptive checklists even if it was not easy to apply, allows researchers to get a deeper insight into methodological facets that a global judgement may leave out

Cancer patients' needs during hospitalisation: a quantitative and qualitative study

BACKGROUND: The evaluation of cancer patients needs, especially during that delicate period when they are hospitalized, allows the identification of those areas of care that require to be improved. Aims of the study were to evaluate the needs in cancer inpatients and to improve the understanding of the meanings of the needs expressed. METHODS: The study was conducted during a "sample day", with all the cancer patients involved having been hospitalized at the Istituto Nazionale Tumori of Milan (INT) for at least 48 hours beforehand. The study was carried out using quantitative and qualitative methodologies. The quantitative part of the study consisted in making use of the Needs Evaluation Questionnaire (NEQ), a standardized questionnaire administered by the INT Psychology Unit members, supported by a group of volunteers from the Milan section of the Italian League Against Cancer. The aim of the qualitative part of the study, by semi-structured interviews conducted with a small sample of 8 hospitalized patients, was to improve our understanding of the meanings, implications of the needs directly described from the point of view of the patients. Such an approach determines the reasons and conditions of the dissatisfaction in the patient, and provides additional information for the planning of improvement interventions. RESULTS: Of the 224 eligible patients, 182 (81%) completed the questionnaire. Four of the top five needs expressed by 40% or more of the responders concerned information needs (diagnosis, future conditions, dialogue with doctors, economic-insurance solutions related to the disease). Only one of the 5 was concerned with improved "hotel" services (bathrooms, meals, cleanliness). Qualitative analysis showed that the most expressed need (to receive more information on their future conditions) has the meaning to know how their future life will be affected more than to know his/her actual prognosis. CONCLUSIONS: Some of the needs which emerged from this investigation could be immediately satisfied (the need for psychological support, the need for economic aid, the need for spiritual support), while others will have to be faced in the longer term; for example, the presence of a high percentage of needs in patient-physician relationships and/or information-communication issues, could be resolved by setting up structured introductory training courses for all clinicians in the institution. On the other hand, the needs related to the living infrastructure (bathrooms, meals, etc...) could encourage the Institution to improve its services

What "best practice" could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations

<p>Abstract</p> <p>Background</p> <p>In palliative care it would be necessary to refer to a model. Nevertheless it seems that there are no official statements which state and describe that model. We carried out an analysis of the statements on practice and ethics of palliative care expressed by the main health organizations to show which dimensions of end-of-life care are taken into consideration.</p> <p>Methods</p> <p>The official documents by the most representative health organisations committed to the definition of policies and guidelines for palliative and end-of-life care had been considered. The documents were analysed through a framework of the components of end-of-life care derived from literature, which was composed of 4 main "areas" and of 12 "sub-areas".</p> <p>Results</p> <p>Overall, 34 organizations were identified, 7 international organisations, and 27 organisations operating on the national level in four different countries (Australia, Canada, UK and United States). Up to 56 documents were selected and analysed. Most of them (38) are position statements. Relevant quotations from the documents were presented by "areas" and "sub-areas". In general, the "sub-areas" of symptoms control as well as those referring to relational and social issues are more widely covered by the documents than the "sub-areas" related to "preparation" and to "existential condition". Indeed, the consistency of end-of-life choices with the patient's wishes, as well as completion and meaningfulness at the end of life is given only a minor relevance.</p> <p>Conclusions</p> <p>An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model.</p

Home-based palliative approach for people with severe multiple sclerosis and their carers: Study protocol for a randomized controlled trial

Background: Preliminary evidence suggests that palliative care may be useful for people with severe multiple sclerosis (MS). The aim of this study is to determine the effectiveness of a home-based palliative approach (HPA) for people with severe MS and their carers. Methods/design: This is a single-blind randomized controlled trial with a nested qualitative study. Seventy-five severe MS-carer dyads are being randomized (at three centers, one in each area of Italy) to HPA or usual care (UC) in a 2:1 ratio. Each center has a specially trained team consisting of four professionals (physician, nurse, psychologist, social worker). The team makes a comprehensive assessment of the needs of the dyads. HPA content is then agreed on, discussed with the patient's caring physician, and delivered over six months. The intervention is not intended to replace existing services. At later visits, the team checks the HPA delivery and reviews/modifies it as necessary. Discussion: The results of our study will show whether the HPA is feasible and beneficial to people with severe MS and their carers living in the three Italian geographic areas. The nested qualitative study will add to the understanding of the strengths and limitations of the intervention

Cancer patients’ needs for volunteer services during Covid-19: a mixed-method exploratory study

Abstract Introduction To date, there are no known studies that have investigated the new need for volunteer services among cancer patients during the Covid-19 pandemic. However, it is essential for volunteer associations to heighten such knowledge to best guide their offer in this challenging period. Aim The present study aims to provide a mapping of the cancer patients’ needs for volunteer services followed at Istituto Nazionale dei Tumori in Milan (Italy) during the Covid-19 pandemic. Since there are no specific questionnaires for this purpose, we created an ad hoc tool for which we report the preliminary result. Method We used a mixed-method multiphase approach. Phase I: in April-May 2020 40 ad hoc paper questionnaires were distributed at the entrance of the aforementioned hospital, with the aim of investigating patients’ needs through two open-ended questions then analyzed through thematic analysis. Phase II: the contents that emerged from Phase I were transformed into items and submitted to the judgment of a small group of “peers” (patients) and “experts” (professionals) in November-December 2020 to evaluate their comprehensiveness, representativeness and intrusiveness. Phase III: in January-February 2021 paper questionnaires, containing the items reviewed in Phase II, were distributed within the hospital to a representative sample of cancer patients. We applied descriptive statistics, Exploratory Factor Analysis (EFA) and Cronbach’s Alpha. Results 32 patients completed Phase I, 3 “peers” and 9 “experts” participated in Phase II, 214 patients completed the questionnaire in Phase III. EFA highlights five kinds of needs during the Covid-19 pandemic, in order of priority: (1) need to be supported at the hospital; (2) need for emotional support; (3) need for daily errands; (4) need for practical support to family members; (5) need to share free time. Preliminary results on the tool are encouraging, although further studies are needed. These results will allow local volunteer associations to adapt their services during the pandemic

Hospital doctors' smoking behavior and attitude towards smoking cessation interventions for patients: a survey in an Italian Comprehensive Cancer Centre.

Purpose Tobacco control guidelines recommend all healthcare professionals to ask patients about their smoking status and to offer them at least minimal cessation advice. However, few data are available about the daily practice of hospital clinicians who work with smoking cancer patients. This study assesses, in a comprehensive cancer center, the physicians' smoking habit, their clinical practice in offering a smoking cessation intervention to patients who smoke, and the training they received in this field. Methods A Web-based survey was sent to 285 physicians. Results The survey response rate was 75%. Sixty-two percent, 24%, and 14% of responders were never, former, and current smokers, respectively. Six percent of all responding physicians have already participated in smoking cessation training and 43% of them declared their willingness to be trained. Eighty-six percent of all responding physicians asked about the patients' smoking status, 50% routinely advised patients to quit smoking, and 32% assessed their motivation to do so. Smoking cessation guidelines were not followed mostly for lack of time, fear to increase patients' stress, and lack of smoking cessation training. Ninety-four percent of responding physicians knew the smoking cessation service for outpatients and 65% referred at least one patient, 66% of responding physicians knew the service for inpatients, and 36% of them asked for at least one intervention in the ward. Conclusions This study pointed out partial adherence of the physicians working in a leading cancer center to the smoking cessation guidelines. The clinicians' smoking habits did not influence the training and the clinical practice in offering patients smoking cessation interventions

Conversion to secondary progressive multiple sclerosis: multistakeholder experiences and needs in Italy

Background Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. Aims To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). Methods We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. Results One hundred sub-categories were identified, grouped into 13 categories and four themes: ‘awareness of the transition’, ‘communication of the transition’, ‘dealing with symptoms worsening’, and ‘needs’. The major unmet needs were collected in four dimensions ‘organization and management; ‘empowerment training’; ‘information’; and ‘policies’. Conclusions Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists’ consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level