Objectif: Au Québec, comme ailleurs dans le monde, bien que le soutien aux familles concernées par les soins palliatifs soit jugé prioritaire, peu de recherches ont été publiées sur le maintien de la relation familiale dans un contexte d’hospitalisation, pourtant essentielle au bien-être des patients et de leurs proches. La présente étude vise donc à décrire les perceptions de proches, plus précisément d’enfants d’âge adulte, sur les changements vécus dans la relation avec un parent hospitalisé en soins palliatifs.
Méthode: Six enfants adultes de patients hospitalisés en soins palliatifs ont participé à une entrevue semi-structurée. L’analyse des transcriptions d’entrevues s’inspire de l’analyse phénoménologique interprétative.
Résultats: Les résultats révèlent des changements de communications verbales et non verbales, notamment l’apparition de gestes d’affection et de connexions symboliques. L’adoption de rôles relationnels spécifiques au contexte, des enjeux relatifs aux perceptions d’implication, et l’intensité et l’éloignement de l’expérience affective sont aussi constatés. En outre, certaines croyances sur la mort et les moyens d’obtenir une conclusion à la relation pourraient avoir une influence sur l’expérience relationnelle des proches. Le personnel hospitalier semble aussi pouvoir agir indirectement sur la relation familiale selon les participants.
Conclusion: Cette étude postule l’existence de trajectoires distinctes d’évolution de la relation familiale en contexte d’hospitalisation en soins palliatifs. Elle permet par ailleurs de constater le rôle de la création de sens dans l’expérience des enfants adultes. Elle informe finalement les intervenants sur les aspects à considérer pour soutenir ces enfants adultes.
OBJECTIVE: Collusion is a largely unconscious, dynamic bond, which may occur between patients and clinicians, between patients and family members, or between different health professionals. It is widely prevalent in the palliative care setting and provokes intense emotions, unreflective behavior, and negative impact on care. However, research on collusion is limited due to a lack of conceptual clarity and robust instruments to investigate this complex phenomenon. We have therefore developed the Collusion Classification Grid (CCG), which we aimed to evaluate with regard to its potential utility to analyze instances of collusion, be it for the purpose of supervision in the clinical setting or research.
METHOD: Situations of difficult interactions with patients with advanced disease (N = 10), presented by clinicians in supervision with a liaison psychiatrist were retrospectively analyzed by means of the CCG. Result 1) All items constituting the grid were mobilized at least once; 2) one new item had to be added; and 3) the CCG identified different types of collusion.
SIGNIFICANCE OF RESULTS : This case series of collusions assessed with the CCG is a first step before the investigation of larger samples with the CCG. Such studies could search and identify setting-dependent and recurrent types of collusions, and patterns emerging between the items of the CCG. A better grasp of collusion could ultimately lead to a better understanding of the impact of collusion on the patient encounter and clinical decision-making.
Grief and bereavement are universal human experiences that do not discriminate based on sex, gender, or sexual orientation. Existing literature provides valuable insight into the bereavement experiences of persons who identify as heterosexuals, but much less can be found on persons who identify as lesbian, gay, bisexual, or transgender/queer* (LGBT*). Given that the historical experiences of loss and personal characteristics such as interpersonal, familial, and social patterns of coping with grief are likely to influence the bereavement process, this study focused on the impact of partner bereavement on the interpersonal relationships and subsequent partnerships of the LGBT* bereaved. To this end, the purpose of this study was to use a mixed-methods approach to better understand how LGBT* persons described their experiences with partner bereavement and to identify what effect these experiences had on interpersonal relationships and subsequent partnerships.
BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits. The aim of this study was to explore COPD patients' experiences with a new and altered palliative organization.
METHODS: The design was interpretive description as described by Thorne. We conducted ten semi-structured interviews with patients with severe COPD from January 2017 to December 2017.
RESULTS: Patients described how the professional relationship and the availability of their nurse was considered as the most important and positive change. It made the patients feel safe, in control, and subsequently influenced their ability to self-manage their life and prevent being hospitalized. The patients did not emphasize the advanced care planning dialogues as something special or troublesome.
CONCLUSION: We showed that it is relevant and meaningful to establish a structure that supports professional relationships between patient, nurse and physician based on patients needs. The new way of structuring the outpatient care was highly appreciated by COPD patients and made them feel safe which brought confidence in self-management abilities.
Qu'est-ce que l'interdisciplinarité ? Ce mode d'action vise un objectif commun, au bénéfice de la personne soignée et de ses proches, en faisant collaborer les différents professionnels du soin. Elle nécessite que ceux-ci, compétents dans leur champ disciplinaire, apprennent à se connaître, à s'écouter et à se faire confiance. La ritualisation des réunions, s'appuyant sur une méthodologie et une organisation formalisées, permettent de l'initier.
Ce livre s'adresse à tous les professionnels de santé, en formation ou en exercice, qui s'interrogent sur la dynamique du soin et sur leur rôle au sein d'une équipe soignante. Il a été pensé comme un guide qui permettra aux équipes de mettre en place des actions interdisciplinaires dans leur quotidien.
There is increasing awareness of the need for effective communication in health care, particularly with people who face a frightening diagnosis and an uncertain future for themselves or someone close to them.
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Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team members to maximize the quality of care provided to these patients. A team of graduate students engaged in a collaborative learning activity to explore professional roles and responsibilities of palliative care team members when caring for adolescent and young adult oncology patients. Following a literature review and community expert interviews, students identified shared responsibilities of all team members and unique contributions of various professions. Engaging in this process highlighted and clarified the full scope of practice for each specialized team member. Educators should consider utilizing a similar collaborative learning activity to enhance students' understanding of the roles and responsibilities of each member of the interprofessional healthcare team.
Objective: Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.
METHOD: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.
RESULTS: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).
SIGNIFICANCE OF RESULTS: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.
Les soignants sont confrontés à la maladie et à la mort, parfois régulièrement. Face à ces situations difficiles, les émotions qu’ils éprouvent affectent leur vie dans toutes ses composantes : corporelle, intellectuelle, spirituelle et sociale. Il est important de prendre en compte ces émotions et d’identifier les ressources qui peuvent être proposées aux soignants. La solidarité entre soignants et la cohésion d’équipe sont également essentielles.
An interprofessional education (IPE) simulation-based geriatric palliative care training was developed to educate health professions students in team communication. In health care, interprofessional communication is critical to team collaboration and patient and family caregiver outcomes. Studies suggest that acquiring skills to work on health care teams and communicate with team members should occur during the early stage of professional education. The Interprofessional Education Collaborative (IPEC®) competency-based framework was used to inform the training. An evaluation examined attitudes toward health care teams, self-efficacy in communication skills, interprofessional collaboration, and participant satisfaction with the training experience. One-hundred and eleven participants completed pre- and post-training surveys. Overall, a majority of participants (97.3%) were satisfied with the training and reported more positive attitudes toward health care teams and greater self-efficacy in team communication skills. IPE participants had higher collaboration scores compared to observer learners. Further research is needed to explore long-term effects of IPE in clinical practice.
To address job satisfaction, and therefore employment retention, of hospice social workers, this study examined how relationships with other members of the interdisciplinary hospice team and perceptions of hospice leadership may be associated with job satisfaction of hospice social workers. The sample of 203 hospice social workers was recruited by e-mailing invitations to hospice social workers identified by hospice directors in three states, use of online social media sites accessed by hospice social workers, and snowball sampling. Study measures included professional experience, hospice characteristics, interdisciplinary collaboration, perception of servant leadership, and intrinsic and extrinsic job satisfaction. Variables significant in the model for intrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, and feeling valued by the hospice physician. Variables significant in the model for extrinsic satisfaction were perception of servant leadership, interdisciplinary collaboration, feeling valued by the hospice physician, and number of social workers at the hospice. Interdisciplinary collaboration was more important for intrinsic job satisfaction and leadership style was more important for extrinsic job satisfaction. Profit status of the hospice, experience of the social worker, caseload size, and other variables were not significant in either model. These results support previous findings that leadership style of the hospice director and relationships with hospice colleagues are important for hospice social workers' job satisfaction. Such low-cost modifications to the hospice work environment, albeit not simple, may improve job satisfaction of hospice social workers.
OBJECTIVES: (1) Compare family decision-makers' perceptions of quality of communication with nursing home (NH) staff (nurses and social workers) and clinicians (physicians and other advanced practitioners) for persons with advanced dementia; (2) determine the extent to which characteristics of NH residents and family decision-makers are associated with those perceptions.
DESIGN: Secondary analysis of baseline data from a cluster randomized trial of the Goals of Care intervention.
SETTING: Twenty-two NHs in North Carolina.
PARTICIPANTS: Family decision-makers of NH residents with advanced dementia (n = 302).
MEASUREMENTS: During the baseline interviews, family decision-makers rated the quality of general communication and communication specific to end-of-life care using the Quality of Communication Questionnaire (QoC). QoC item scores ranged from 0 to 10, with higher scores indicating better quality of communication. Linear models were used to compare QoC by NH provider type, and to test for associations of QoC with resident and family characteristics.
RESULTS: Family decision-makers rated the QoC with NH staff higher than NH clinicians, including average overall QoC scores (5.5 [1.7] vs 3.7 [3.0], P < .001), general communication subscale scores (8.4 [1.7] vs 5.6 [4.3], P < .001), and end-of-life communication subscale scores (3.0 [2.3] vs 2.0 [2.5], P < .001). Low scores reflected failure to communicate about many aspects of care, particularly end-of-life care. QoC scores were higher with later-stage dementia, but were not associated with the age, gender, race, relationship to the resident, or educational attainment of family decision-makers.
CONCLUSION: Although family decision-makers for persons with advanced dementia rated quality communication with NH staff higher than that with clinicians, they reported poor quality end-of-life communication for both staff and clinicians. Clinicians simply did not perform many communication behaviors that contribute to high-quality end-of-life communication. These omissions suggest opportunities to clarify and improve interdisciplinary roles in end-of-life communication for residents with advanced dementia.
BACKGROUND: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks.
METHODS: Focus group discussions with general practice teams in Germany were conducted to identify barriers to and enablers of an optimal support for family caregivers. Focus group discussions were analysed using content analysis.
RESULTS: Nineteen providers from 11 general practices took part in 4 focus group discussions. Participants identified challenges in communication with patients, caregivers and within the professional network. Communication with patients and caregivers focused on non-verbal messages, communicating at an appropriate time and perceiving patient and caregiver as a unit of care. Practice teams perceive themselves as an important part of the healthcare network, but also report difficulties in communication and cooperation with other healthcare providers.
CONCLUSION: Healthcare providers in general practice identified relational challenges in daily primary palliative care with potential implications for EoL care. Communication and collaboration with patients, caregivers and among healthcare providers give opportunities for improving palliative care with a focus on the patient-caregiver dyad. It is insufficient to demand a (professional) support network; existing structures need to be recognized and included into the care.
BACKGROUND: Despite increased attention and knowledge in palliative care, there is still confusion concerning how to interpret the concept of palliative care and implement it in practice. This can result in difficulties for healthcare professionals in identifying patients whom would benefit from palliative care, which, in turn, could lead to a delay in meeting patients' needs.
AIM: To explore healthcare professionals' perceptions of palliative care.
METHOD: Data were collected through twelve interprofessional focus group interviews in community care and hospital wards in south Sweden (n = 74). All interviews were analysed with latent content analysis.
RESULTS: Three domains were revealed: first, a blurred conceptual understanding as participants described palliative care using synonyms, diagnoses, phases, natural care and holism; second, a challenge to communicate transitions concerned the importance of how and when the transition to palliative care was communicated and documented; finally, a need for interprofessional collaboration was described as well as the consequences for severely ill persons, relatives and healthcare professionals when it was not established.
CONCLUSION: The perceptions about how to interpret palliative care differed as well as when palliative care should be offered and decided, which might have practical consequences. How long a person has left to live is of great significance for decision-making, caregiving and preparation in palliative care. The challenge is to use interprofessional communication to promote understanding and collaborate across varied care levels. Integrating palliative care across diverse care levels could be one way to reduce the ambiguity of palliative care.
OBJECTIVE: To identify factors that hinder or facilitate the palliative care consultation team's (PCCT) successful collaboration with other providers from the perspectives of both PCCT and nonpalliative specialists.
METHODS: Qualitative study, including semistructured interviews with PCCT and nonpalliative care providers from various specialties at 4 Midwestern hospitals. Interviews were audio-recorded and transcribed into written text documents for thematic analysis. Palliative care consultation team (n = 19) and nonpalliative care providers (n = 29) were interviewed at their respective hospital sites or via telephone. Palliative care consultation team providers included physicians, nurse practitioners, registered nurses, social workers, and one chaplain. Specialists included critical care physicians, surgeons, hospitalists, nephrologists, oncologists, and cardiologists.
RESULTS: Six themes emerged reflecting barriers to and facilitators of successful collaboration between the PCCT and other providers. Primary barriers included attitudes about palliative care, lack of knowledge about the role of the PCCT, and patient and family resistance. Facilitators included marketing of the palliative care service and education about the expertise of the PCCT.
CONCLUSION: In order to engage in more effective collaboration with other specialty providers, the PCCT may consider strategies including structured educational interventions, increased visibility in the hospital, and active marketing of the utility of palliative care across disciplines.
Eprouver du creux au fond de soi, lorsque l'on est soignant, c'est peut-être désagréable mais qu'est-ce-que c'est utile, aussi ! Ce qui est "en creux" ouvre à l'expérience d'une réciprocité d'êre, en humanité, avec les personnes soignées. Que serait un soignant de soins palliatifs, en relation avec des personnes qui sont dans l'épreuve de "ne plus pouvoir" à longueur de jours, sans jamais vivre le désarroi de l'impuissance, la tristesse de l'impossible ?
OBJECTIVE: Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life.
METHOD: A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. Result: Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.Significance of results: Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.
BACKGROUND: Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care.
METHODS: A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically.
RESULTS: The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients.
CONCLUSIONS: The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.
Death and dying remains a taboo topic in many social settings, and is underrepresented in health profession training. This report describes the use of the Death Café model as a forum for engaging students in discussion of death and dying with their peers and other health professionals. A Death Café is an opportunity for individuals to gather in an informal environment to exchange thoughts about issues associated with death, dying, loss, and illness. This report outlines the preparation, implementation, and evaluation of a Death Café event hosted at a nursing school as part of an academic health center. Twenty-four participants from five disciplines participated in discussions, reported positive experiences, and desired to learn more about issues surrounding death and dying. Findings from this event suggest that this approach may be useful for institutions seeking to provide additional learning opportunities for students and/or healthcare professionals on palliative and end-of-life care in a supportive and enabling context.
BACKGROUND: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD.
METHOD: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years.
RESULTS: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions.
CONCLUSION: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.