La démarche palliative en établissement ainsi que l'appropriation de celle-ci reste encore un enjeu de taille. Le lien étroit entre l'accompagnement des patients en fin de vie et la mise en oeuvre d'une dynamique participative doit susciter l'adhésion de l'ensemble d'une équipe. Une étude qualitative
sous forme de questionnaires auprès d'aide-soignant(e)s et d'infimier(e)s issus de différents services de chirurgies met en évidence un manque de temps, de moyens humains et relationnels pour la réalisation optimale de cette démarche dans la spécialité chirurgicale. Malgré une volonté certaine d'instaurer un staff pluriprofessionnel, il apparaît une méconnaissance de ce modèle "sociétal" destiné à prévenir la souffrance des soigants dans l'exercice de leur profession.
Background: Prognostication is an essential component of palliative care for patients with advanced cancer but also poses challenges. Little is known about physicians’ perspectives on prognostication and prognostic tools used in palliative care practice in Eastern countries.
Objectives: To explore Korean physicians’ perspectives and experiences with prognostication in their palliative care practices.
Methods: Semi-structured interviews were conducted in Korea in 11 palliative care physicians. A constant comparative and grounded theory approach was used to derive themes from interview transcripts.
Results: Participants on average had 6.4 (SD = 4.5, range 0.5-15) years of hospice and palliative care experience. We identified 4 main themes about prognostication: (1) the importance of prognostication (to help patients and their families prepare for death, to determine the appropriate time of transition to hospice care, to facilitate appropriate decision making, and to facilitate communication with patients and their families); (2) difficulties of prognostication (discomfort estimating the exact date of death); (3) basis of prognostication (clinical prediction of survival as well as prognostic scores); and (4) areas for further research (need for a simpler scoring system or parameters to predict survival with greater certainty).
Conclusion: Palliative care physicians in Korea reported similar perceptions about the role and challenges inherent in prognostication compared to clinicians in Western cultures. However, they emphasize the need to predict final days to keep families with dying patients, reflecting family-centered aspects of Asian culture. They reported frustrations with inaccurate prognostication schemas and called for the development of simpler, more accurate predictors as a focus of future research.
Young widowhood is a unique experience that has received little in-depth attention in research and clinical settings. The present study examined the lived experiences of young men and women who had lost a spouse. Eleven men and women between the ages of 18 and 49 were interviewed about their experiences postloss using phenomenological methods. After coding the interviews, three themes emerged: (1) relationship prior to death, (2) coping, and (3) concerns. Clinical implications included the need for more accessible resources for young widowed individuals, such as therapeutic services, finances, and childcare.
Despite the potentially devastating effects of a death on the lives of adolescents, little is known about their help-seeking experiences. We interviewed by telephone 39 bereaved adolescents on their help-seeking experiences. Thematic analysis resulted in three themes: Formal support, Informal support and School-related support. Participants provided a critical appraisal of positive and negative experiences, and noted barriers and facilitators for help-seeking. As adolescents bereaved through suicide may receive less social support, professional help is a much-needed auxiliary. Parental encouragement is important in accessing adequate professional help.
Child loss is the most traumatic loss a parent can experience, increasing their risk of negative outcomes such as complicated grief. Unexpected loss in the unfamiliar environment of the Emergency Department (ED) significantly increases this risk. Despite this knowledge, research on child loss in the context of the ED is scarce. An interpretive description qualitative research study was performed with eight parents (five mothers and three fathers) to examine their experience of unexpectedly losing a child in the pediatric ED. Data collection included interviews, demographic questionnaires, and field notes. Data were analyzed using a constant comparative method and revealed four main themes: “grief as waves,” “being the good parent,” “coping through the waves of grief,” and “the new normal.” Improving understanding around child loss and implementing stronger support for parents, through communication, advocacy, and physical presence while in the ED, could greatly reduce parents’ risk of negative outcomes.
Cette étude qualitative s’est attachée à décrire les représentations des professionnels vis-à-vis du concept de spiritualité afin de mieux cerner son intégration dans l’accompagnement. La méthodologie retenue repose sur l’organisation de deux focus groups pluriprofessionnels (en institution et au domicile), adjoignant chacun 6 professionnels impliqués dans l’accompagnement en soins palliatifs (2 médecins, 5 infirmiers, 3 aides-soignants, 1 psychologue et 1 interne). Une analyse de contenu a permis de mettre en évidence trois thèmes pivots émanant des focus groups : les représentations de la spiritualité des professionnels ; la place qu’elle occupe dans leur pratique et leurs attentes en matière d’accompagnement spirituel. De par le caractère polysémique qu’elle revêt, la spiritualité est un concept difficile à aborder lors de la rencontre avec le patient pour les professionnels. Cependant, tous soulignent l’importance d’assurer un accompagnement global de la personne en tenant compte de l’ensemble des dimensions de la personne, y compris spirituelle et ce, qu’elle soit religieuse ou non. Proposer à l’autre un espace, une présence, une écoute à cette dimension, si la demande s’en fait sentir, ce sont des attitudes que tendent à suivre les professionnels pour éclairer le cheminement personnel des patients et la mise en sens de ce qu’ils traversent.
Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health.
Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks.
Design:Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach.
Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines.
Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress.
Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death.
Background: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person’s life, memories and achievements.
Aim: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee.
Results: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos.
Conclusion: This study expands the existing continuing bonds model of grief to include an ‘autobiographical chapter’, creating ‘The Model of Reciprocal Bonds Formation’.
OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement.
DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach.
PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
BACKGROUND: Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals' and users' perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments.
METHODS: A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis.
RESULTS: Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care.
CONCLUSIONS: This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.
Background: Mobile health (mHealth) is a promising tool for improving health outcomes. However, the benefits of using mHealth in palliative care are under studied.
Objective: As a first step to designing meaningful palliative care-specific mobile applications, this research explored provider perspectives regarding the utility of mHealth in palliative care.
Design: A qualitative phenomenological study with semistructured interviews.
Setting/Subjects: roviders from multiple disciplines working in palliative care settings at an academic medical center.
Results: Thematic analysis resulted in five provider recommendations regarding the utility and design of palliative care-specific mHealth, including (i) thoughtfulness to language, context, and delivery when assessing palliative care needs; (ii) include tools for prognosis and advance care planning; (iii) tailor health and quality-of-life goals; (iv) emphasize supports for family and caregivers; and (v) consider technology abilities of older adults.
Conclusions: Palliative care providers are enthusiastic about the use of mHealth to improve care coordination, facilitate communication, enhance symptom monitoring, and improve patient-family support. However, providers have reservations about mobile functionality and depersonalized assessment and care. Providers stress the utility of mHealth to facilitate palliative care rather than replace important multidisciplinary services.
The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
Although considerable research efforts have focused on bereavement outcomes following loss, there are few studies which address the role of memorialization, particularly as it relates to formal service provision. Currently the funeral, cemetery, and crematorium industries are observing a steady decline in traditional and formal memorialization practices. This study aims to identify current memorialization practices and emerging trends, highlight key priorities for improving service outcomes for the bereaved, and understand the implications of changing consumer preferences for service provision. The study’s qualitative research design incorporates two phases, a scoping literature review followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries. A key finding is that the trend toward contemporary and informal memorialization practices blurs the lines between the role of consumers and service providers. There is a clear opportunity for service providers to engage in community education as a means of building supportive relationships with and improving service outcomes for the bereaved.
Introduction : au plan international, le concept de sédation palliative n’est pas défini de façon uniforme. En Suisse, il est encadré par les recommandations émises en 2005.
Contexte : la conceptualisation de la sédation palliative est susceptible d’être hétérogène chez les infirmiers , en raison de la diversité des protocoles développés localement, mais aussi, des expériences vécues, posant ainsi des difficultés épistémologiques et pratiques. Cette problématique, bien qu’indispensable pour bien circonscrire l’objet de futures recherches en la matière en Suisse, n’a pas été explorée dans la partie francophone de ce pays.
Objectifs : découvrir et décrire la conceptualisation de la sédation palliative par les infirmiers d’une unité de soins palliatifs en Suisse romande.
Méthode : recherche qualitative exploratoire avec entretiens compréhensifs individuels.
Résultats : la sédation palliative est considérée comme un traitement de dernier recours face à un/des symptôme(s) réfractaire(s). La recherche d’une dose minimale efficace et le caractère au moins initialement temporaire de la sédation sont les principaux éléments mis en avant par les infirmiers.
Discussion et conclusion : la conceptualisation de la sédation palliative est conforme aux recommandations suisses. Ces résultats constituent une base afin de développer une étude nationale en la matière.
CONTEXT: The World Health Assembly Palliative Care Resolution in 2014 and the inclusion of palliative care within the sustainable development goals raised optimism that palliative care would no longer be a peripheral aspect of global health. However, no funding, accountability measures, or indicators for palliative care development accompanied these policy developments. This risks health actors continuing to prioritize the attainment of better known target-driven aspects of health care.
OBJECTIVES: To explore the attitudes of international palliative care experts regarding how the future development of palliative care can be accelerated.
METHODS: About 16 international palliative care experts were interviewed for their epistemic expertise. Participants were interviewed face to face or via Skype. Interviews were recorded, transcribed nonverbatim, and analyzed using a thematic approach (NVivo).
RESULTS: Participants strongly supported the rollout of national palliative care policies around the world for two reasons: to ensure palliative care attracts national funding streams and to attract global funding for palliative care. The absence of a global indicator for palliative care development was considered a severe impediment to the inclusion of palliative care within global efforts toward universal health care. Advocacy partnerships, using human rights approaches with economic frames, were considered the most effective methods of influencing policymakers.
CONCLUSION: Palliative care represents a value proposition that is not currently being maximized by advocacy. Advocates should consider palliative care developmentally, focusing on key asks for development and consider how palliative care can contribute to other international development priorities, in particular poverty reduction.
OBJECTIVE: To explore generalist palliative care providers' experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.
METHODS: Semi-structured interviews conducted with generalist staff (those providing 'primary' or 'general' palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.
RESULTS: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion 'display rules'; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing 'human' and 'professional' expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.
CONCLUSION: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.
PRACTICE IMPLICATIONS: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.
Recent research has highlighted that the number of people impacted by a death by suicide is far greater than previously estimated and includes wider networks beyond close family members. It is important to understand the ways in which suicide impacts different groups within these wider networks so that safe and appropriate postvention support can be developed and delivered. A systematic review in the form of a qualitative research synthesis was undertaken with the aim of addressing the question 'what are the features of the experiences of workers in health, education or social care roles following the death by suicide of a client, patient, student or service user?' The analysis developed three categories of themes, 'Horror, shock and trauma', 'Scrutiny, judgement and blame', and 'Support, learning and living with'. The mechanisms of absolution and incrimination were perceived to impact upon practitioners' experiences within social and cultural contexts. Practitioners need to feel prepared for the potential impacts of a suicide and should be offered targeted postvention support to help them in processing their responses and in developing narratives that enable continued safe practice. Postvention responses need to be contextualised socially, culturally and organisationally so that they are sensitive to individual need.
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology.
Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis.
Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.
CONTENT: Burnout is common amongst palliative care clinicians. Resilience helps to reduce burnout, compassion fatigue and is associated with longevity in palliative care.
OBJECTIVES: We aimed to study palliative care clinicians who have remained in the field for longer than 10 years to deepen our understanding on their views on burnout and resilience.
PATIENTS AND METHODS: We conducted a qualitative study using semi-structured interviews and purposive sampling on 18 palliative care clinicians - 5 doctors, 10 nurses and 3 social workers who worked in various palliative care settings (hospital palliative care team, home hospice and inpatient hospice). The mean age of the interviewees was 52 years old and the mean number of years practicing palliative care was 15.7 years (ranging from 10 -25 years). The interviews were recorded verbatim, transcribed and analysed using a grounded theory approach.
RESULTS: 4 major themes emerged from our analysis - Struggling, Changing Mindset, Adapting and Resilience (SCAR). Intervening conditions such as self-awareness, reflection, and evolution were also important factors. The core phenomenon of our study was that of 'Transformational Growth' - a process which palliative care clinicians have to go through before they achieve resilience. We also further classified resilience into both personal and collective resilience.
CONCLUSION: Our findings highlight the evolving process of transformational growth which palliative care clinicians must repeatedly undergo as they strive towards sustained resilience and longevity. It also stresses the importance of taking individual and collective responsibility towards building a culture of personal and team resilience.