Journals
Magazine:
PALLIATIVE CARE AND SOCIAL PRACTICE
ISSN:
2632-3524
Year:
2023
Vol:
17
Pgs:
26323524221147538
Background: Gratitude has sparked interest in the world of health. It is considered as a personality characteristic or as an emotion. However, little has been explored in the context of the interpersonal relationship of caring. An exploration in the context of end of life is ground-breaking.
Objectives: This study analyses and reflects on the object of gratitude from the perspective of both the persons being cared for and the professionals providing health care. What are patients and their family members grateful for in palliative care? What is the reason for gratitude? What do these health professionals perceive when there is gratitude? These questions were answered considering the gratitude generated in health care encounters, not gratitude as personality trait.
Methods: The phenomenological approach was used starting from lived clinical experiences. In the light of the dialogue between clinical experiences and philosophy, this study proposes an explanation of the 'real' or essential object of gratitude in palliative care. It was conducted within the context of palliative care. The study materials were manifestations of gratitude expressed or felt in clinical encounters and published in newspapers or shared in daily encounters. These were the basis for analysis and reflection and interdisciplinary dialogue.
Findings: The analyses performed indicated healing or deep relief in serious diseases as objects of gratitude according to patients' perspective, and professional self-affirmation until the end according to the professionals' perspective.
Conclusion: The two perspectives shared an important common fact, namely, the need to consider the persons in their entirety, and the importance of not losing sight of the value they have. This concept would characterize the nature of gratitude, its object being the 'objective good' for patients, family members, and palliative care professionals.
Magazine:
BMC PALLIATIVE CARE
ISSN:
1472-684X
Year:
2022
Vol:
21
N°:
1
Pp:
227
Background: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries.
Methods: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis.
Discussion: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.
Magazine:
PALLIATIVE MEDICINE
ISSN:
1134-248X
Year:
2022
Vol:
29
N°:
1
Pp:
1 - 2
In this context, Erasmus + has promoted a project (RESPACC 2020-1-R001-KA202-080128) involving four countries:
Romania (Hospice Casa Sperantei and the University of Transylvania), Spain (University of Navarra), Greece (Hospice Galillee), and
Belgium (European Association for Palliative Care EAPC). The project research Competencies for Palliative Care Clinicians (RESPACC).
(RESPACC) makes reference letter to Research (research) Expertise, Selfdevelopment Palliative Care, Attitude, Communication and Competence (skill).
Authors:
Aparicio, M. (Corresponding author); Centeno, Carlos; Juliá, G.; et al.
Magazine:
BMJ SUPPORTIVE & PALLIATIVE CARE
ISSN:
2045-435X
Year:
2022
Vol:
12
N°:
E4
Pp:
e562 - e569
Objectives: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs).
Methods: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the staff experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate.
Results: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test).
Conclusions: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
Magazine:
QUALITATIVE HEALTH RESEARCH
ISSN:
1049-7323
Year:
2022
Vol:
32
N°:
7
Pp:
1126 - 1138
Providing palliative care can be both challenging and rewarding. It involves emotionally demanding work and yet research shows that burnout is lower than in other fields of healthcare. Spontaneous expressions of gratitude from patients and family members are not uncommon and are highly valued. This study explored the experience of Spanish palliative professionals who received expressions of gratitude from their patients and families. A phenomenological approach was used to better understand the role of receiving gratitude in participants¿ lives. Interviews were transcribed verbatim and a phenomenological approach to analysis was undertaken using macro-thematic and micro-thematic reflection. Two team members independently engaged in this reflection with an inductive approach. The analysis was shared and discussed at periodic meetings to identify the key themes and sub-themes of the gratitude experience. Ten palliative professionals were interviewed. Participants engaged
in a process of recognizing, internalizing and treasuring the expressions of gratitude which they then used for reflection and growth. These expressions were a powerful and deeply meaningful resource that the palliative professionals revisited over time. Receiving expressions of gratitude invited a stronger sense of the value of one¿s self and one¿s work that was motivational and protective, particularly during challenging times.
Magazine:
PANAMERICAN JOURNAL OF PEDAGOGY
ISSN:
1665-0557
Year:
2021
N°:
32
Pp:
78 - 98
Entering the world of work is costly and one of the first obstacles is the competence deficit that university students sometimes present. To remedy the excess of a decontextualised theory, the EHEA (European Higher Education Area Education ) has sponsored a methodological change that promotes a teaching more internship, since the most effective learning is active and connected to experience. Thus, the university teaching focuses, among other aspects, on the achievement of learning outcomes in the form of competences associated with the labour market. In this context, more practical and applied methodologies are being tested in [Spanish] universities, including Service-Learning.
The goal of this work is to find out whether, for the employers participating in our study, university students who take part in Service-Learning activities develop the profile competences they are looking for, making them more attractive candidates in selection processes, thus improving their employability. To this end, a generic qualitative research was developed. Three focus groups were conducted with a purposive sample of thirteen employers of graduates from different Schools of the university, belonging to different sectors. The thematic guide included questions on the competences most in demand by employers, Service-Learning and its influence on the professional profile .
Magazine:
BMJ SUPPORTIVE & PALLIATIVE CARE
ISSN:
2045-435X
Year:
2021
Vol:
11
N°:
2
Pp:
156 - 162
OBJECTIVE:Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context. METHODS:A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, ¿2 and analysis of variance. RESULTS:201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12). CONCLUSIONS:One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to have death. A linguistically grounded model is proposed, differentiating the experiences of the 'wish' or 'desire' to die, with or without HD ideation.
Magazine:
NURSE EDUCATION TODAY
ISSN:
0260-6917
Year:
2021
Vol:
101
Ppgs:
104879
Education in palliative care is a required competence for the nursing degree.Pedagogical strategies in palliative care are mainly aimed at promoting an understanding of patients with advanced disease. Phenomenological texts are stories intended to evoke lived experiences and help understand these complex situations. However, there is no evidence regarding the experience of reading phenomenological texts in nursing. The aim of this study is to determine what impact nursing students have when reading a phenomenological text about the experience of people living with advanced cancer. The students¿ writings showed that reading the phenomenological text caused them to reflect and feel moved and challenged. The impact on the students is grouped into three categories: the experience of the corporeality of patients makes students aware of the importance of the body; the disease as an individual transformative process challenges students; and the experiences of advanced cancer
patients make students aware of the importance of how they care for patients and their families. The reading of a phenomenological text on the experience of living with advanced cancer is innovative and may be a teaching method that promotes care focused on the person with advanced illness, key aspect for student¿s competency in clinical practice.
Magazine:
PALLIATIVE MEDICINE REPORTS
ISSN:
2689-2820
Year:
2021
Vol:
2
N°:
1
Pp:
34 - 39
Emotional exhaustion is a problem many palliative care professionals face during their activity. Art therapy is emotionally beneficial for palliative patients that experience suffering, but its impact on professionals¿ experience of suffering has not been researched.
Aim:To examine the immediate reactions of professionals after an art therapy workshop focused on personal self-care, also considering previously used coping strategies. Design: A four-hour art therapy workshop was designed including a generic qualitative study of participants. Participants were palliative care professionals and their reactions were examined using an ad hoc questionnaire with open-ended questions. Descriptive analysis of quantitative variables and thematic analysis of open-ended questions were conducted. Results: Seventeen professionals participated voluntarily. They rated the workshop positively, using words like ¿calm¿ and ¿relaxation¿ to express the effects of the workshop, which they considered therapeutic and a source of self-awareness. For some, it allowed them to release emotions; for others, it enabled introspection and opened up a more elaborated emotional response. They thought artistic expression would be useful for their colleagues, or even for their own personal development. In the workshop, professionals opened up and explained how they face intense moments on a day-to-day basis: how they approach the situation, or how they try to control their surroundings; how they disconnect/distract from the situation, or how they try to control their surroundings.
Magazine:
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
ISSN:
1660-4601
Year:
2021
Vol:
18
N°:
10
Pp:
5348
PC continues to be misunderstood within the world of healthcare. PC professionals are key agents for promoting a greater understanding of their field. It aims to examine the messages, both implicit and explicit, that PC professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of PC professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organised manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behaviour and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that PC professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate myths, misunderstandings, lack of positive PC reputation
Authors:
Mason, S. (Corresponding author); Ling, J.; Mosoiu, D.; et al.
Magazine:
JOURNAL OF PALLIATIVE MEDICINE
ISSN:
1096-6218
Year:
2021
Vol:
24
N°:
12
Pp:
1867 - 1871
Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online.
Objective: To determine the feasibility and acceptability of adapting NGT to an online format.
Setting: Palliative care clinicians (n = 31) in Greece, Romania, and Spain.
Methods: NGT discussions were used to elicit palliative care clinicians' opinions, and to rank priorities regarding their understanding and needs about clinical research. Preliminary online training of country-based facilitators was followed by content analysis of debriefing reports to capture learning related to the online NGT format.
Results/Implementation: Three NGT sessions used online platforms (Zoom/MS Office/Mentimeter) for the meetings. Analysis of the facilitator reports generated three themes: preparation/facilitation/timing; optimising technology; and interactions.
Conclusions: Conducting NGT meetings online is viable and may be advantageous when compared with traditional face-to-face meetings, but requires careful preparation for participants to contribute effectively.
Magazine:
BMC PALLIATIVE CARE
ISSN:
1472-684X
Year:
2020
Vol:
19
N°:
1
Pp:
88
Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The concept Palliative Care¿ can be linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialised units are identified as ¿places of death¿ as opposed to ¿places of life¿ meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC.
Methods
A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants.
Results
A total of 242 hours of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us.
Conclusion
The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
Magazine:
QUALITATIVE HEALTH RESEARCH
ISSN:
1049-7323
Year:
2020
Vol:
30
N°:
8
Pp:
1143 - 1155
Abstract
Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n=22) that refines the theory of Living Well with Chronic Illness¿ for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that ¿I am dying.¿ Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.
Authors:
Pergolizzi, D.; Crespo, I.; Balaguer, A.; et al.
Magazine:
BMJ OPEN
ISSN:
2044-6055
Year:
2020
Vol:
10
N°:
2
Pp:
e034413
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 provide 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.
Magazine:
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
ISSN:
0885-3924
Year:
2019
Vol:
57
N°:
3
Pp:
627 - 634
CONTEXT:
Demoralization is a state of existential distress in patients with advanced illness, typically with coping difficulties, feelings of loss of sense, and purpose in life and despair, among other things. The New Demoralization Scale (DS-II) is an evaluation tool for this syndrome, which has recently been reformulated on a shorter scale.
OBJECTIVES:
The objective of this study was to obtain a Spanish version of the DS-II and to assess its psychometric properties in advanced cancer patients in Spain and a number of Latin American countries.
METHODS:
Following a translation-back translation process, a validation study and a confirmatory analysis using structural equation models with their corresponding latent constructs were undertaken. Patients completed the DS-II in Spanish (DS-II (es)), the Hospital Anxiety and Depression Scale, and the Edmonton Symptom Assessment System-revised. Reliability was studied according to internal consistency; construct validity and concurrent validity with the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment System-revised; discriminant validity using the Karnofsky Performance Status scale; and feasibility, with response ratio and required time. Cutoff points were established, and sensitivity and specificity were studied.
RESULTS:
The DS-II (es) was obtained. One hundred fifty patients completed the validation study. The confirmatory analysis showed coherence, and all items correlated positively with their subscales and with the overall scale. Cronbach's alpha for the DS-II (es) was 0.88, for the sense and purpose subscale 0.83, and for the coping ability 0.79. Demoralization correlated significantly with emotional distress (rho = 0.73, P < 0.001). The tool distinguished between patients with diverse functional levels (rho = -0.319, P = 0.001). Cutoff points at 10 and 20 out of 32 were established. The scale showed high sensitivity (81.97%) and specificity (80.90%). The prevalence of demoralization was 33% in our sample.
CONCLUSION:
The Spanish version of the new Kissane DS-II demoralization scale has shown to be valid, reliable, and feasible with adequate psychometric properties.
Magazine:
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
ISSN:
1660-4601
Year:
2019
Vol:
16
N°:
24
Quality medical education, centred on patient¿s needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student¿s professional development. Method: Sequential exploratory strategy mix method. Inventory was built based on the themes that emerged from the analysis of four qualitative studies about nurse and medical students¿ perceptions related to palliative care teaching interventions (Ballesteros et al 2014, Centeno et al 2014&2017, Rojí et al 2017). The structure and psychometrics of the inventory obtained has been tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity were tested in the first survey group. To verify the inventory structure a confirmatory factor analysis was performed in a second survey group. Results: the has 33-items and seven dimensions: holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach¿s-alpha was 0.73-0.84 in all seven domains, ICC: 0.95. The confirmatory factor analysis CFI was 1 with a Standardized Root Mean Square index 0.088(SRMR) and obtained a 0.99 goodness-of-fit R-square coefficient. Conclusions: This inventory is valid to assess student¿s professional development.
Magazine:
BMC PALLIATIVE CARE
ISSN:
1472-684X
Year:
2019
Vol:
18
N°:
1
Pp:
28
Background: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Methods: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval. Discussion: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies.
Magazine:
NURSING INQUIRY
ISSN:
1320-7881
Year:
2019
Vol:
26
N°:
1
Pp:
e12259
Phenomenology of practice is a useful, rigorous way of deeply understanding human phenomena. Therefore, it allows research to be conducted into nursing's most sensitive and decisive aspects. While it is a widely used research approach and methodology in nursing, it is seldom addressed and made use of in its practical and applied value. This article aimed to approach the global outlook of van Manen's hermeneutic¿phenomenological method to better understand its theoretical background and to address and support the contribution this method can make to nursing, if rigorously applied. For a professional discipline like nursing, van Manen's approach is especially interesting because, in addition to contributing to the body of knowledge of nursing, it provides a special kind of knowledge that allows nurses to act in a more reflective manner, and with tact and skill, in certain situations and relationships that arise in their daily practice. A more in¿depth understanding of this research methodology may help nurse¿researchers make good use of it and also harness knowledge derived from this type of research. This comes as a result of assuming that phenomenological texts, the final product of the research, have tremendous educational potential for people who read them carefully.
Magazine:
JOURNAL OF ADVANCED NURSING
ISSN:
0309-2402
Year:
2018
Vol:
74
N°:
7
Pp:
1723 - 1734
Aims
To offer a complete outlook in a readable easy way of van Manen's hermeneutic¿phenomenological method to nurses interested in undertaking phenomenological research.
Background
Phenomenology, as research methodology, involves a certain degree of complexity. It is difficult to identify a single article or author which sets out the didactic guidelines that specifically guide research of this kind. In this context, the theoretical¿practical view of Max van Manen's Phenomenology of Practice may be seen as a rigorous guide and directive on which researchers may find support to undertake phenomenological research.
Design
Discussion paper.
Data sources
This discussion paper is based on our own experiences and supported by literature and theory. Our central sources of data have been the books and writings of Max van Manen and his website ¿Phenomenologyonline¿.
Implications for nursing
The principal methods of the hermeneutic¿phenomenological method are addressed and explained providing an enriching overview of phenomenology of practice. A proposal is made for the way the suggestions made by van Manen might be organized for use with the methods involved in Phenomenology of Practice: Social sciences, philosophical and philological methods. Thereby, nurse researchers interested in conducting phenomenological research may find a global outlook and support to understand and conduct this type of inquiry which draws on the art.
Magazine:
PALLIATIVE MEDICINE
ISSN:
1134-248X
Year:
2018
Vol:
25
N°:
2
Pp:
105 - 113
Amyotrophic lateral sclerosis (ALS) affects different aspects of people's lives and therefore, the goal of this study is to know the health-related quality of life (HRQoL) of these patients. A narrative review of articles from the last 10 years was carried out. The search strategy included the words core topic "amyotrophic lateral sclerosis" and "health-related quality of life" and their synonyms translated into English and was applied in Cochrane, Cinahl, Pubmed, PsycInfo and Dialnet. Nine articles were included after applying the selection criteria. The level of evidence generated by the articles was analysed using the indications of the US Agency of Health Research and Quality as reference letter and the results of the programs of study were subsequently analysed and grouped by subject area. A total of 3 areas were identified core topic: the importance of the emotional, social and physical needs of ALS patients; the presence of the caregiver and the patients' HRQoL; and the types of coping that can help HRQoL. The physical dimension has the worst HRQoL results, but since the social and emotional dimensions are also less significantly affected, the overall HRQoL score remains stable. The family and the patient's environment emerge as an aspect core topic to be considered in the care of these patients.
Magazine:
PALLIATIVE & SUPPORTIVE CARE
ISSN:
1478-9523
Year:
2018
Vol:
16
N°:
1
Pp:
73-79
ICS ATLANTES
The PDI has intrinsic therapeutic value and is useful in clinical practice, and it is also a way of examining issues related to dignity and the meaning of life within the context of advanced-stage illness. There is a need for studies that examine patient experiences through a PDI-based intervie
Magazine:
JOURNAL OF ADVANCED NURSING
ISSN:
0309-2402
Year:
2017
Vol:
73
N°:
11
Pgs:
2633 - 2641
Aim: To explore the views of current and ex¿smoker nurses on their role in supporting patients to stop smoking. Background: Long-term conditions are closely linked to harmful lifestyle behaviours, including smoking and overeating. Health professionals have an important role to play in promoting healthier lifestyles. It has been described that nurses¿ health behaviours may be a barrier to their health promotion practice. There is a need to gain further understanding on why nurses¿ health promotion activity is influenced by their own health behaviour.
Design: A secondary analysis of qualitative data gathered in 2010 in the context of a project that aimed to develop a smoking cessation intervention for nurses. Eleven transcripts of semi-structured interviews conducted with nurses (current and ex¿smokers) working in one university hospital in Spain. Data were analysed using framework analysis.
Findings: Nurses who smoked engaged in social justification in terms of social norms and work stress. Only nurses who had quit smoking were able to identify the negative feelings it generated and the effect that it had on their past health promotion practice. This was expressed by ex-smokers as an internal conflict that prevented them from supporting patients with their own habit.
Conclusion: nurses who smoke may be inhibited as health promoters without being aware of it. Interventions that focus on helping these professionals deal with the challenges associated with these encounters
Magazine:
EUROPEAN JOURNAL OF PALLIATIVE CARE
ISSN:
1352-2779
Year:
2017
Vol:
24
N°:
2
Pp:
72 - 74
The term intangible describes something that has no physical presence and that cannot be touched - love and truth, for example, are both intangible. To a certain extent, many of the values of palliative care are also intangible. In this article, we discuss these facets of palliative care along with the nature of advanced illness and the essence of caring. We also reflect on how these intangible values are perceived, both by those who receive palliative care and those who provide it. Finally, we analyse the difficulty in conveying the message of palliative care, to society and to other professionals, precisely because of the intangible nature of what we wish to transmit.
Magazine:
PALLIATIVE MEDICINE
ISSN:
1134-248X
Year:
2017
Vol:
24
N°:
4
Pp:
219 - 226
The use of qualitative research (QI) in Palliative Care (PC) is on the rise, perhaps because they have many aspects in common. Both focus on the person and their environment and are particularly interested in the human experience. The goal of this article is to present some of the most frequently used approaches in the health sciences, providing examples of programs of study of PC. This is to help those new to CI to explore possible approaches they might use to conduct research in CP. Through the ¿armchair walkthrough¿ exercise, the core topic aspects of a project of research are concretised, considering the different approaches: ethnography, phenomenology, narrative and grounded theory. Becoming familiar with qualitative methodology and some of the approaches will help PC practitioners to pose new questions and challenges with research rigorous.
Palabras core topic: research qualitative, ethnography, phenomenology, narrative, grounded theory.
Magazine:
BMC MEDICAL EDUCATION
ISSN:
1472-6920
Year:
2017
Vol:
17
N°:
1
Pp:
257
Medical Schools are challenged to improve PC education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on PC decision-making but aimed at introducing these other important competencies as well. Methods: The 20 hour-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, staff experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group. Results: 21 students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians. Conclusions: PC decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.
Magazine:
PROGRESS IN PALLIATIVE CARE
ISSN:
0969-9260
Year:
2017
Vol:
25
N°:
5
Pp:
230 - 234
Patients with advanced cancer often continue to choose aggressive interventions and/or treatments up until
the final stages of life. This clinical approach may compromise the preservation of a patient¿s quality of life,
and secondarily, contributes to higher healthcare costs. Therefore, the ethics of enrolling terminal cancer
patients in clinical trials which are testing new, aggressive chemotherapy agents requires careful
discussion between the Oncology and the Palliative Care team. We present the case of a patient with
stomach cancer admitted to a clinical trial at a very advanced stage of her disease. A number of clinical
and ethical difficulties encountered by the PC team are discussed as well as possible solutions
Magazine:
BMC PALLIATIVE CARE
ISSN:
1472-684X
Year:
2017
Vol:
16
N°:
1
Pp:
47
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.
Magazine:
PALLIATIVE MEDICINE
ISSN:
1134-248X
Year:
2016
Vol:
23
N°:
3
Pp:
141 - 152
Noelia García-Rueda; Begoña Errasti-Ibarrondo; María Arantzamendi Solabarrieta. The nurse-patient relationship with advanced and terminal illness: literature review and conceptual analysis. Medicina Paliativa.
goal : To explore and understand the meaning of the nurse-patient relationship with advanced and terminal illness and its benefits through the literature available.
Method
Evidence review by systematised searches of the instructions of data Cochrane Library Plus, PubMed, UNIKA, PsycInfo and CINAHL, and by the snowball technique. The search strategy for words core topic was divided into 3 large blocks (nurse-patient relationship, nursing and the cared-for person with advanced and terminal illness). Following the literature review, a conceptual analysis of the identified bibliography was carried out to explore the meaning of the terms used, the differences and similarities and the characteristics attributed to the nurse-patient relationship in the literature, as well as its benefits and the previous requirements to establish it.
Results
Ten articles were included in the study and the meaning of the terms used to refer to the nurse-patient relationship was explored through conceptual analysis. The main characteristics attributed to this relationship were also identified: speech, trust, understanding and presence, as well as empathy and compassion.
Magazine:
CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
ISSN:
1751-4258
Year:
2016
Vol:
10
N°:
4
Pp:
324 - 329
In recent years, there has been a growing interest in promoting dignity in care, and specific interventions
have been developed to include it at the end of life. The patient dignity question (PDQ) is a recent, novel
and simple intervention that healthcare professionals can implement; however, little is known about its
impact. This scoping review aims to examine and map out the PDQ literature.
Recent findings
Studies suggest that patients, families and professionals have a positive view of the PDQ in that it helps to
get to know patients and provide them with the best care possible. The PDQ seems to promote an
environment of care focused on the person and the prevalence of more human aspects in clinical
encounters between professionals and patients. This is especially so in situations in which human aspects of
the healthcare relationship at baseline received lower marks. Healthcare professionals thought that
performing the PDQ to determine what is important to the patient is a feasible and effective exercise.
Summary
The published literature suggests that PDQ is a beneficial intervention for approaching and getting to know
a patient as a person. More studies are needed that measure pre¿post-PDQ changes and that demonstrate
their impact on patient care.
Magazine:
EUROPEAN JOURNAL OF CANCER CARE
ISSN:
0961-5423
Year:
2016
Vol:
25
N°:
4
Pp:
551 - 569
The aim of the study was to understand the experience of people living with advanced-stage cancer through literature. The search included The Cochrane Library, PubMed, PsycInfo, CINAHL and Cuiden. Thirteen studies were included. A qualitative goal-synthesis was conducted. One thread emerged from the thematic synthesis: the desire to live as normally as possible, despite being aware of the proximity of death. Three themes also emerged: "a process that is unique" with its four sub-themes; "support network" and "health context," each of them having two sub-themes. This study concludes that living with advanced-stage cancer is a unique and complex process which has both positive and negative aspects. The review provides a comprehensive view of the experience, which considers the importance of the support network and the health context in which the person lives. In this study, "normalcy" is the adjustment to the new reality and living as closely as possible to the way one lived before the disease, while developing a new relationship with being finite and death. A better understanding of the experience of living with advanced-stage cancer will help health professionals to identify the needs of the patients in order to plan individual, high-quality care.
Magazine:
NURSING OUTLOOK
ISSN:
0029-6554
Year:
2015
Vol:
63
N°:
3
Pp:
255-268
Errasti-Ibarrondo, B; Pérez, M; Carrasco, J.M; Lama, M; Zaragoza, A; Arantzamendi, M. Essential elements of the relationship between the nurse and the person with advanced and terminal cancer: A goal-ethnography. Nursing Outlook DOI: 10.1016/j.outlook.2014.12.001
Indexed in: MEDLINE, CINAHL and the Journal Citation Reports published by Thomson Reuters.
area : Nursing-SSCI
Impact Index (JCR Science 2014): 2.359
Position of the journal in the area: 3/101
Quartile: 1
Magazine:
ANALES DEL SISTEMA SANITARIO DE NAVARRA
ISSN:
1137-6627
Year:
2015
Vol:
38
N°:
3
Pp:
439 - 452
A quarter of the people with heart failure are at an advanced stage of the disease, during which they experience numerous common and distressing symptoms that have an impact on all spheres of their life. In this context, there is a need for frequent assessment and clinical monitoring of patients. The aim of this review is to identify the instruments used in assessing patients with advanced heart failure. For the purposes of this study, any type of questionnaire, scale or functional test used to assess some aspect of these patients was considered to be an instrument. Forty-nine tools were identified that make it possible to assess symptoms, psychological, cognitive and spiritual aspects and quality of life. The information provided on the most used instruments and their availability and applicability is a first step for their possible integration into daily clinical practice. Thus, professionals who work with these patients can improve the identification of specific needs, enabling their subsequent management and monitoring.
Magazine:
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
ISSN:
0885-3924
Year:
2015
Vol:
50
N°:
6
Pp:
874-81
The Spanish version of the PDI showed adequate psychometric properties when tested with advanced cancer patients. This research provides a three-factor alternative in Spanish to the PDI.
Magazine:
ENFERMERIA (MONTEVIDEO)
ISSN:
1688-8375
Year:
2015
Vol:
4
N°:
2
Pp:
10 - 11
Full title of the journal: Enfermería: Cuidados Humanizados. Its ISSN is: 1688-8375.
Magazine:
NURSE EDUCATION TODAY
ISSN:
0260-6917
Year:
2014
Vol:
34
N°:
6
Pp:
e1 - 6
Objective: We explored the contribution of optional palliative care (PC) learning to the training of undergraduate nursing students.
Design: This is a qualitative, exploratory study.
Participants: PC students from two universities (n=236) responded to the open question: What was the contribution of the PC course to your training?
Methods: A thematic analysis of the respondents' answers was performed with investigator triangulation.
Findings: Four themes were identified. Firstly, the PC course provided a comprehensive view of the nursing discipline. Secondly, the course helped the students to know how to interact with, communicate with and better understand patients. Thirdly, the contribution of the course to the students' staff growth prompted them to reflect personally on death, thus promoting self-awareness. Finally, the students considered the PC course to be of great importance in the nursing curriculum.
Conclusion: Nursing students believed that a PC course was an essential component in their training, which contributed favourably to their staff and professional development.
Magazine:
BMJ SUPPORTIVE & PALLIATIVE CARE
ISSN:
2045-435X
Year:
2014
Vol:
6
N°:
1
Pp:
128-34
The subject of PC turns out to be very important to students, who almost unanimously evaluated their experience positively and highlighted the benefits of attending a PC course. Students especially reported being surprised by the humane and holistic features of the course, and they found that what they learned in the course is applicable to all patients and prepares them to work better as doctors. Participants recommend the course for all undergraduate students as a core component of the curricula.
Magazine:
CUADERNOS DE BIOETICA
ISSN:
0328-8390
Year:
2014
Vol:
25
N°:
84
Pp:
243-256
All the models included in this review provide health professionals with a starting point for reflection and incorporation of practices that seek to preserve the social dignity of terminally ill patients. One of the models identified has been applied to the internship clinic with positive results.
Magazine:
SPANISH SOCIETY OF NEUROLOGICAL NURSING. SCIENTIFIC JOURNAL
ISSN:
2013-5246
Year:
2012
Vol:
36
N°:
1
Pp:
31 - 38
ICS Introduction: At bibliography there is a gap related to the holistic perspective of the process of integrating Parkinson's disease into the lives of patients and relatives.
goalThe aim of the study is to explore the process of living with Parkinson's disease for patients and relatives, as well as the factors and mechanisms that favour or inhibit it.
Method: The project ReNACE is a project with a combined methodology, multicentre and multidisciplinary, of 3 years duration, consisting of 2 phases (qualitative and quantitative), carried out in the Clínica Universidad de Navarra, a Health Centre of the Navarra Health Service-Osasunbidea and the association Navarra de Parkinson. Preliminary results of Qualitative Phase I are presented. We have collected data with semi-structured interviews, sociodemographic sheets and scales (Parkinson's stage). A comparative content analysis (NVivo9 software) and a statistical analysis (SPSS 15.0) were carried out.
Results: 15 patients with Parkinson's disease and 16 relatives participated. Their median and interquartile age range were 73 (65¿76.25) and 65 (59.5¿74) years, respectively. In the process of adaptation to Parkinson's, two dynamic stages stand out: 1) extraordinary stage, and 2) normal stage. The main factors and mechanisms influencing living with Parkinson's disease were: coping strategies, family support, personal and social networks, available resources, as well as education and training.
Magazine:
INTERNATIONAL JOURNAL OF PALLIATIVE NURSING
ISSN:
1357-6321
Year:
2012
Vol:
18
N°:
12
Pp:
597-605
ICS Objective: To describe Spanish nurses' preparedness to care for hospitalised terminally ill patients and how this translates into care delivery.
Methods: An exploratory, sequential mixed methods study with two stages. Stage I used unstructured observations of 22 hospital nurses over 235 hours to understand their daily reality, followed by semi-structured interviews with 21 nurses to elicit their perspectives. Stage 2 was a regional survey (65% response rate) concerned with hospital nurses' opinions of caring for terminally ill patients and their perceived competence.
Results: The nurses felt competent to provide physical but not emotional care for terminally ill patients. They reported that care could be improved, particularly through providing more emotional care. This coincided with an observed focus on physical care. The nurses reported a lack of support in caring for terminally ill patients and wanted more education on emotional issues and dealing with their own feelings.
Conclusion: There is a need for an integrative approach in Spain that combines an educational programme with a supportive environment, focusing on developing nurses' competence to deliver emotional care and deal with their own feelings. Promoting a supportive environment might enable nurses to change their behaviour when caring for terminally ill patients and deal with patients' emotional as well as physical needs.
Magazine:
Journal of Clinical Nursing
ISSN:
0962-1067
Year:
2010
Vol:
19
N°:
1-2
Pp:
217 - 226
Magazine:
Nursing Index
ISSN:
1132-1296
Year:
2010
Vol:
19
N°:
4
Pp:
283 - 288
Magazine:
JOURNAL OF PALLIATIVE CARE
ISSN:
0825-8597
Year:
2010
Vol:
3
N°:
26
Pp:
167 - 175
Studies on the effectiveness and efficiency of palliative care (PC) services that use a methodology similar to that used by studies in other medical specialties face serious limitations, since the goals of PC are substantially different. Qualitative research methods can make an important contribution to our understanding of the features of palliative care (PC) that are most relevant to patients and their relatives. The goal of this study was to understand the reasons behind the gratitude shown in letters from bereaved relatives sent to two PC units, one in Spain and one in Portugal. A thematic analysis of the content of the letters was independently carried out by three researchers, who later collaborated to write up the results. Relatives appeared grateful primarily for the humane attitude, professional treatment, and emotional support that their loved ones received from the PC team; they thanked the team for creating a special atmosphere and offering holistic care, and they talked about the contrast between PC and other forms of care. The unsolicited gratitude expressed in their letters constitutes a valid and particularly rich source of information about the contribution that a PC team can make.