The sudden and unexpected nature of fatal work incidents can leave family members with a strong need to know how and why the worker died. Forty Australian family members were interviewed to identify the information sought following fatal work incidents and explore the factors enhancing or impairing satisfaction with the account of the death. Findings demonstrated that employers tended to divert responsibility to the worker, to mask underlying systemic failures. Satisfaction was enhanced if family members believed a sense of justice was attained and formal investigations were able to expose the truth and those responsible for the death were identified.
Objectifs: L’implication des proches dans les soins palliatifs est considérée comme un élément essentiel de la qualité de la prise en charge du patient. Leur intégration est tributaire de leurs attentes vis à vis de l’unité de soins palliatifs et de leurs représentations des soins palliatifs. Dans un contexte où la population se dit peu informée, cette étude pilote visait à interroger la dynamique des attentes et des représentations des proches en unité de soins palliatifs dans le but d’améliorer la qualité de vie des patients et de leur famille.
Matériel et méthodes : L’approche compréhensive par une méthodologie qualitative a été privilégiée. Des entretiens semi-directifs auprès des proches ont été menés au sein d’une unité de soins palliatifs, à l’entrée puis quelques jours après.
Résultats : Huit proches de patients en soins palliatifs ont été inclus dans l’étude et deux d’entre eux ont pu participer au second entretien. Les proches témoignaient à leur entrée dans l’unité une attente commune, celle d’une prise en charge différente de celle vécue pendant les précédentes hospitalisations. Le besoin de sécurité apparaît en lien avec la crainte de l’abandon du patient et de ses proches et révèle un manque de connaissance sur le rôle de l’unité de soins palliatifs. La qualité des échanges instaurés d’emblée, grâce au premier entretien d’accueil avec le médecin, semble initier une réponse appropriée.
Conclusion: La dimension relationnelle apparaît comme un levier pour soutenir les proches dans leur besoin de sécurisation et d’informations. Une étude à plus grande échelle permettrait de comprendre davantage et plus précisément comment les proches traitent une période qui demeure insupportable et de proposer aux équipes soignantes des éléments d’une réponse mieux adaptée aux besoins et aux attentes.
AIM: In this study, we aimed to investigate the effect of health literacy of the patient caregiver on the care results of palliative care patients.
METHODS: Two hundred and forty-two patients who were hospitalised in palliative care units of seven hospitals in the city in January 2018 were involved in the study. Mortality of the patients was checked 3 months later. A survey interrogating the sociodemographic characteristics of the patients and Turkish translation of Health Literacy Survey - European Union to measure the health literacy level of the caregivers were used.
RESULTS: About 19.50% of the patient caregivers are in adequate (sufficient/perfect) HL group in term of general HL. Caregivers had difficulty to access information/knowledge of what to do in case of emergency. Prevalence of bedsore occurrence in patients whose caregiver has 'inadequate' HL is higher than patients whose caregiver has 'adequate' HL. Rate of 'inadequate HL' of the caregiver is higher in dead group. As the length of hospitalisation variable value increases 1 unit, risk of mortality decreases 2%.
CONCLUSIONS: Health literacy levels of the individuals dealing with the care of palliative unit patients hospitalised in our region are low. Amelioration of health literacy of the caregivers will have a direct effect on patient health and prevention of complications. Improving health literacy must be a priority target for a more quality patient care and less complication. The issues that caregivers felt themselves insufficient should be addressed and necessary actions should be taken in the identified issues.
AIM: To describe and explain the process of transition from cure-focused to comfort-focused healthcare as perceived and reported by patients, family members and healthcare providers.
BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patient and family.
DESIGN: Qualitative metasynthesis.
DATA SOURCES: Medline, CINAHL and PsycInfo databases, searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members and/or healthcare providers were included.
REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analyzed using qualitative coding.
RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships and focus on quality of living.
CONCLUSION: Understanding the developmental process that can be engaged by patients and families at end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.
Introduction : La HAS a créé en 2016 un document d'information et d'aide à la rédaction des directives anticipées. L'objectif était de répondre au manque de rédaction des directives anticipées depuis 2005, en lien avec un défaut d'information sur le dispositif. L'objet de notre étude était d'explorer les opinions et perceptions des médecins généralistes (MG) sur ce nouveau document, et comment ils pourraient l'intégrer dans leur pratique en soins primaires.
Méthodes : Étude qualitative par entretiens individuels semi-directifs réalisée auprès de 9 MG après échantillonnage raisonné et conduits jusqu'à saturation du recueil de données. Analyse thématique manuelle avec double codage croisé, dans une perspective phénoménologique. Résultats : Les MG jugent les documents pertinents, complets, mais complexes pour certains patients. Le manque de temps et la difficulté à parler de fin de vie sont perçus comme les freins principaux à l'utilisation de l'outil. Néanmoins les MG pensent qu'il permet d'aborder le sujet des directives anticipées auprès des patients et les amène à une réflexion sur leur fin de vie. Selon les médecins, la mise en place du dispositif nécessiterait d'être accompagné d'une information de la population et une formation des professionnels de santé.
Discussion : Les documents de la HAS sont complets et peuvent faciliter la rédaction des directives anticipées s'il y a une information de la population par les médias. Cela doit s'accompagner de la démocratisation de la discussion sur la fin de vie entre le patient et son médecin. Elle devra être initiée par le médecin.
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La loi de 2005 relative aux droits des malades et à la fin de vie, dite loi Léonetti, complétée en 2016 par la loi Claeys Léonetti sur les nouveaux droits des personnes en fin de vie, a prévu en France la possibilité pour toute personne majeure d'exprimer par écrit sa volonté personnelle sur les conditions de limitation ou d'arrêt de traitement en situation de fin de vie, pour le cas où elle serait devenue hors d'état de faire connaître sa volonté. Ce dispositif de "directives anticipées" (DA) existe aux États-Unis et en Australie depuis le début des années 1990, plus récemment dans d'autres pays d'Europe (Allemagne, Suisse.). Dans leur article dans ce même numéro de Médecine, "La place du médecin et de la famille dans la décision pour des patients en fin de vie", Bismuth et al., à partir d'une situation concrète vécue par un jeune médecin en formation, analysent les difficultés rencontrées par les équipes soignantes dans la prise en charge des patients en fin de vie. Au-delà des questions fondamentales éthiques de la limitation, voire l'arrêt, de traitements de maintien en vie et du refus de "l'obstination déraisonnable", où est l'intérêt final du patient et qu'en est-il du respect de ses choix personnels ?
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Objectif de lâ€™étude : Par une étude qualitative, nous avons voulu analyser les conséquences sur lâ€™information reçue de la présence de patients présentant un cancer des voies aérodigestives supérieures à une réunion de concertation pluridisciplinaire comparativement à une processus dâ€™annonce conventionnel.
Patients et méthode : Six hommes ont été interrogés lors dâ€™un entretien individuel, semi-directif et enregistré. Ils ont été répartis en deux groupes : trois nâ€™ayant pas participé à la réunion de concertation pluridisciplinaire et trois y ayant pris part. Après avoir été exactement retranscrits sous forme numérique, les propos de chacun ont été analysés à lâ€™aide dâ€™un logiciel dâ€™analyse sémantique et lexicométrique Tropes®.
Résultats : Les patients des deux groupes sâ€™estimaient bien informés, parfois trop. Lâ€™utilisation fréquente du « je » dans chaque groupe montrait quâ€™ils se sentaient intégrés. Les patients participant à la réunion de concertation pluridisciplinaire en étaient satisfaits mais les informations y étaient davantage condensées, ce qui a pu les surprendre voire les angoisser et leur choix était également plus ouvertement demandé, ce qui a pu être pris pour un manque de certitude de la part des médecins.
Conclusion : Quâ€™ils aient ou non assisté à la réunion de concertation pluridisciplinaire, les patients des deux groupes sâ€™estimaient bien informés. La présence à la réunion de concertation pluridisciplinaire présente lâ€™avantage de pouvoir discuter de lâ€™ensemble des possibilités thérapeutiques et lâ€™inconvénient de trop condenser ces informations qui doivent être reprises dans un second temps avec un médecin. Ce mode particulier du processus dâ€™annonce ne doit pas forcément être généralisé, mais peut être offert à certains patients.
BACKGROUND: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs.
AIMS: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care.
METHODS: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers.
FINDINGS: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support.
CONCLUSION: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.
BACKGROUND: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process.
AIM: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them.
DESIGN: Semi-structured interviews which were transcribed and analysed using Grounded Theory.
SETTING/PARTICIPANTS: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device.
RESULTS: Two core categories arise ('Fight' and 'The child as a life-meaning generator'). In all the cases, the child supplied the meaning to go on, and the Palliative Care Unit (CPU) helped in the daily care of the child and solving problems derived from the handling of the GT.
CONCLUSIONS: It is necessary to improve the process of giving bad news and to introduce models of health care that focus on parents and child as the center of palliative care. It is also necessary to develop educational programs that enable continuity of care at home for children with palliative needs.
L'association réunit un groupe de lecture de la revue, conçu comme un moyen de formation continue pour nos bénévoles accompagnants. Il s'agit bien, dans l'expérience que nous en avons, d'un moment d'information mais sourtout d'échanges de nos pratiques d'accompagnement. C'est aussi un moyen de soutenir la motivation des bénévoles et leur sentiment d'appartenance à un courant fort qui met l'humain au coeur de leur engagement.
BACKGROUND: The supporting role of caregivers is crucial to cancer patients' care and well-being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context.
AIM: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital.
DESIGN: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three-step process.
SETTING/PARTICIPANTS: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed.
RESULTS: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home.
CONCLUSION: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.
BACKGROUND: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia.
OBJECTIVE: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers' preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers' mobile device usage and their desire for receiving information via mobile devices.
METHODS: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities.
RESULTS: More women than men were in the patient group ( 21=17.2, P<.001) and in the caregiver group ( 21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregiversâ€™ desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006).
CONCLUSIONS: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.
Objective: To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).
Methods: A cross-sectional survey was conducted within four multidisciplinary palliative homecare teams (HCTs), 17 hospital-based palliative care units (PCUs) and 13 hospital-based mobile palliative support teams (PSTs) in Belgium. During four measurement periods, structured questionnaires were administered to people being guided by PCSs and relatives of patients who had died while under the care of PCSs.
Results: In total, 628 patients (80%) and 980 relatives (55%) responded; 73-82% and 75-77% respectively reported having received the right amount of information. Compared with those receiving care within a PCU, those being supported by a PST were more likely to report suboptimal information provision and decision-making. Relatives of those who had died while under the guidance of a PST were also more likely to report suboptimal information provision than their PCU counterparts.
Conclusion: Although information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service.
Practice implications: Information provided within PCUs offering highly personalised, continuous care appears to both groups more satisfactory than that provided by palliative care teams mainly supporting care staff.
OBJECTIVE: To explore the demographic factors and the level of knowledge related to information and communication technologies of potential users of a palliative care information system.
METHODS: The Task, User, Representation, Functionality (TURF) framework was applied to characterize potential users (patients and caregivers) of an information system for palliative care in a private clinic in Medellin, Colombia, through a survey.
RESULTS: We analyzed 35 patients and 39 caregivers. The majority were women, that lived in urban area and belonged to middle-income socioeconomic stratum. Caregivers, in contrast to patients, are common users of information and communication technologies.
CONCLUSION: An information system should focus on the needs of caregivers, and it would be targeted to subjects facing challenges related to technology adoption; information and communication technologies are interesting and important tools for the improvement of health team.
Comme en d'autres lieux, nous cherchons en soins palliatifs à prendre en compte le malade dans sa globalité. Aussi voulons-nous le considérer comme un sujet porteur d'une parole et d'un désir, et non comme un objet de soins.
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BACKGROUND: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice.
OBJECTIVES: To identify the information needs of informal home hospice caregivers.
DESIGN: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis).
PARTICIPANTS: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization. Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition.
RESULTS: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides.
CONCLUSION: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.
BACKGROUND: As the "do not resuscitate" (DNR) discussion involves communication, this study explored (1) the effects of a title that included "allow natural death", and of information contents and outcomes of the decision; and (2) the information needs and consideration of the DNR decision, and benefits and barriers of the DNR discussion.
METHODS: Healthy adults (n = 524) were presented with a scenario with different titles, information contents, and outcomes, and they rated the probability of a DNR decision. A questionnaire including information needs, consideration of the decision, and benefits and barriers of DNR discussion was also used.
RESULTS: There was a significantly higher probability of signing the DNR order when the title included “allow natural death” (t = - 4.51, p < 0.001), when comprehensive information was provided (F = 60.64, p < 0.001), and when there were worse outcomes (F = 292.16, p < 0.001). Common information needs included remaining life period and the prognosis. Common barriers were the families’ worries and uncertainty about future physical changes.
CONCLUSION: The title, information contents, and outcomes may influence the DNR decisions. Health-care providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.
OBJECTIVES: This study aimed to reveal Japanese elders' perspective on optimal timing and method of receiving unified guidance about advance directives (AD).
METHODS: We convened 202 elders (average age 66) to learn about end-of-life at Kyoto University. They listened to a presentation and viewed two videos on advance care planning and AD; then 167 completed detailed questionnaires about unified timing and methods of providing such information.
RESULTS: A majority of Japanese elders (79%) agreed with unified guidance in combination with the issue of health insurance cards at age 65 or 75. The most preferred method for receiving information was video presentation.
CONCLUSIONS: Japanese elders appear to welcome the idea of receiving information about AD when they are issued health insurance cards at age 65 or 75. Use of video materials holds great promise for educating elderly Japanese about their choices on AD.
The aim of this study was to identify the needs, beliefs, and practices of Muslim family members during the end-of-life care for a family member in the intensive care unit (ICU) in Saudi Arabia. This was a phenomenological study using in-depth individual interviews to gather data. Ten family members of adult ICU patients receiving end-of-life care were interviewed. The experiences of family members during end-of-life care were reflected in four major themes: (a) the spirituality of death, (b) family's need for information, (c) being there, and (d) the ICU environment. Participants placed high value on religious practices such as prayer, and appreciated when these practices could be accommodated in the ICU. Family participants also detailed their need for frequent communication and opportunities to ask questions about the care of their critically ill loved one. Being able to spend as much time as desired in close proximity to the critically ill patient particularly as the end of life approaches was also important, with participants suggesting that visitation times should be waived. Finally, family participant suggested that changes were needed to the ICU environment to make accommodating large families easier and more comfortable particularly when they wish to spend significant time at the bedside of their loved one. Family should be prioritized as an extension of the care provided to critically ill ICU patients, particularly those approaching end of life. A model of care should be introduced to deliver supportive and holistic care during the end-of-life care journey, supported by appropriate education regarding family care at the end of life.