Role of health care professionals in preventative activities and vaccination programs during outbreaks

Purpose: The general purpose of TELL ME study was to give an insight into the experiences of European family physicians with management of H1N1 pandemic flu. Methods: Qualitative research methods (focus group discussions, one-to-one interviews, and online data collection) were used to explore family doctors’ opinion and suggestions. Overall 158 family physicians took part in the study from six European countries. Results: Family doctors’ most important experience was that the official campaign was not able to compensate negative effects of the mass media. Due to the poor evidence-based information about new vaccines, it was difficult to convince the public and some health care professionals too. Lack of unified directives – under unclear circumstances – made the routine patient care more difficult and hampered the collaboration between different health care providers. Family physicians felt a pressure from health authorities to achieve high immunization rate, but got only a little support from them. Despite the difficulties, vaccination program was a success, mainly among high-risk population. For better handling of a future pandemic, Hungarian family physician made many general and practical suggestions

Ki döntsön az élet végén? Az ellátás előzetes tervezésének nemzetközi gyakorlata és hazai lehetőségei = Who should decide at the end of life? International practice of advance care planning and possibilities for adaptation in Hungary

Absztrakt: Súlyos betegségek előrehaladott stádiumában szükség van az élet utolsó szakaszára vonatkozó döntések meghozatalára. Az ellátás előzetes tervezése a beteg számára biztosítja a döntés lehetőségét arra az esetre, ha az önálló döntéshozatal már nem lehetséges. A komplex – kezelésekre, a gondozás körülményeire, az értékpreferenciákra kiterjedő – tervezés a leghatékonyabb. Az ellátás előzetes tervezése javítja az életvégi ellátás minőségét, növeli az ellátással való elégedettséget, és csökkenti a hozzátartozók pszichés terhelését. A célok és\ud preferenciák keretet adnak a professzionális ellátásnak, és az ellátás költségei is mérsékelhetők ezáltal. A tervezés pozitív hozadékait kutatások igazolják, és már számos szakmai irányelvben szerepel. Az élet végét övező kommunikációs tabu, a betegek és a hozzátartozók elutasító hozzáállása, illetve az ellátók részéről a szakértelem és a feltételek hiánya azonban nehezíti a gyakorlati megvalósulást. Magyarországon az ellátás előzetes tervezése szinte ismeretlen, pedig törvényi lehetőség van a kezelések visszautasítására, akár előzetesen is. Az ellátás előzetes tervezésének hazai bevezetéséhez szükség van valamennyi szereplő együttműködésére, a téma graduális és posztgraduális képzésbe való beemelésére, a gyakorlati alkalmazást segítő körülmények megteremtésére, valamint a társadalmi tudatosság növelésére. Orv Hetil. 2018; 159(4): 131–140. | Abstract: At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients’ preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients’ preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131–140

A gyász új perspektívái

Absztrakt A gyász az élet természetes része, és mindig egyedi formát ölt. A kutatók mégis megpróbáltak és megpróbálnak különböző teóriákat kidolgozni, hogy értelmezzék, magyarázzák és emberközelivé tegyék ezt a különleges jelenséget. A szerzők célja napjaink gyászelméleti irodalmának áttekintése és a külföldön már bemutatásra került gyászelméletek megismertetése a hazai szakemberekkel. A XX. század első fele óta a gyászelméletek jelentős változáson mentek keresztül. Az újabb gyászelméletek több ponton is szakítanak a korábbi elméletek elgondolásaival. A gyász szakaszokra osztása helyett a rugalmas, megküzdésorientált kettős folyamatmodell, a jelentésalkotási folyamatot középpontba helyező jelentéskonstrukció-elmélet, valamint a veszteséget követő, fejlődésre fokuszáló modellek a meghatározóak. A szerzők fontosnak tartják, hogy a klinikumban tevékenykedő kollégák megismerjék a legújabb gyászelméleteket, hiszen munkájuk során gyakran találkoznak veszteséggel és veszteséget megélő emberekkel. A bemutatott modellek hozzájárulnak a hatékony munkavégzéshez, a gyászfolyamat jobb megértéséhez és a gyászolók megfelelőbb támogatásához. Orv. Hetil., 2015, 156(39), 1569–1576

Az alapellátásban dolgozó orvosok és munkatársaik preventív szerepe járványok idején. Fókuszcsoportokra alapozott szakmapolitikai hatáselemzés a 2009/2010. évi H1N1 influenza-világjárvány tapasztalatairól | The role of primary care professionals in preventive activitites during epidemics Focus group assessment of the management of flu pandemic in 2009/2010

Absztrakt: Bevezetés: A 2009/2010-es H1N1 influenzavírus okozta pandémia számos kérdést vetett fel, amelyek megválaszolása egy jövőbeni járvány kezelésének hatékonyabb tervezését és kivitelezését biztosíthatja. Célkitűzés: Az EU közösségi finanszírozásában transzkontinentális konzorcium keresett választ arra, hogy miként lehet a lakosság széles körét kommunikációs módszerekkel rábírni betegségmegelőzésre vakcinációs ajánlások elfogadásával és/vagy higiénés normák tudatos betartásával. Módszer: A TELL ME projekt úgynevezett „fókuszcsoport”-módszerrel vizsgálta családorvosok körében a H1N1 influenzajárvány betegségmegelőző intézkedéseinek kulcspontjait azzal a céllal, hogy az összegyűjtött véleményekkel, ötletekkel javítani lehessen későbbi hasonló népegészségügyi vészhelyzetek kezelhetőségét. Eredmények: A tanulmány eredményei hangsúlyozzák a családorvosok kulcsszerepét járványok kapcsán felmerülő prevenciós feladatok teljesítésében – főként lakosságközeli elhelyezkedésükből, illetve a páciensek körében szakértelmük, hozzáállásuk és személyes példamutatásuk révén kivívott bizalomból adódóan. Az egészségügyi szakemberek felé történő szakmai kommunikációban pedig a bizonyítékokon alapuló információk rendelkezésre bocsátása, kiemelten az oltásokat érintő összehasonlító klinikai vizsgálatok eredményeiről, mutatkozott elsődleges igénynek. Következtetések: Sikerült megállapítani, hogy az alapellátó szakemberek bevonása növelni képes a kommunikáció hitelességét, továbbá, hogy érdemes a véleményvezér szakemberek kommunikációs készségét, szereplési rutinját igénybe venni. Legyen a „Látogassa meg családorvosát, előzzék meg közösen a betegséget!” jelmondat a médiában közvetített elsődleges üzenet – vészhelyzetben, de azon kívül is. Orv. Hetil., 2017, 158(14), 523–532. | Abstract: Introduction: The experiences gained during the H1N1 flu pandemic in 2009/2010 could serve for a better planning and management of later outbreaks. Aim: The EU-sponsored TELL ME project aimed to provide evidence and develop models for improved risk communication during infectious disease crisis. Among its objectives was to develop original communication strategies regarding appropriate messages related to preventative behavior and advice based on uncertainties also addressing vaccine-resistant groups. Method: Focus groups involving family physicians (FPs) were called upon for assessing the main issues during the H1N1 pandemic, the possibilities for improving the preventative process and outcomes. Results: The study demonstrated the key-role of family doctors during outbreaks; patients put their trust in their elected FP, he or she representing a personal example of health behavior. The evidence based information about effectiveness and safety of vaccines are needed in communication towards health professionals. Conclusions: Involvement of health care professionals in the communication provides validity, the communication routine of opinion leaders meant to be used for such purpose. The main media message should be: “For prevention go to see your family doctor”. Orv. Hetil., 2017, 158(14), 523–532

Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe:protocol for an international, multicenter, prospective, mixed method study

Background The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3?months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe

What are the fears and support needs of those living alone in the last year of life and who responds?

Background There is a general assumption that family caregivers will be available and willing to provide support to those living with terminal illness in the last year of life; but what of those who live alone at this time? Others (1) have highlighted the need for patients in this situation to develop trusting relationships with their professional caregiving network and with key professionals in particular. This can enable sensitive discussion and planning about future care wishes – a clear necessity as disease progresses. Design and methods Patients with advanced cancer, COPD and chronic heart failure (CHF), with a prognosis of less than 12 months, were recruited at clinical services sites in five European nations: Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data were collected using semi-structured interviews at baseline and at three months follow-up. Quantitative data were collected using POS, CANHELP Lite tools at monthly intervals and in weekly self-completed patient ‘diaries’. Interviews focused on how integrated palliative care services responded to patients’ needs and problems. A transnational comparative analysis was conducted using a qualitative thematic approach. Results Of 157 patient participants, 48 (30%) lived alone (range by country: 13%-41%). Of this sub-sample, the mean age was 73 years and 58% were women. Diagnoses were: cancer (n=27), COPD (n=13), CHF (n=7), not recorded (n=1). Many patients reported being fearful about the future; feeling lonely and isolated; feeling a burden on others; and problems with ‘the little things’. Conversely, many were able to give examples of where individual professionals and services responded to their needs quickly and with sensitivity. Informal sources of support from neighbours and friends were apparent and included practical help, emotional assistance and social engagement. Conclusion Commonalities across the participating nations in the fears and concerns of patients living alone in the last year of life were apparent. However, there was variability in how services responded to needs and in the extent to which these responses were integrated and coordinated. Lone patients are a potentially unrecognised sub-group with a particular set of needs in relation to professional engagement. Integrated palliative care services need to acknowledge this and respond accordingly. Further research into how palliative care service provision towards the end of life dovetails with informal support networks is required. 1. Hanratty et al. (2013). What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Family Practice. 14:22. http://www.biomedcentral.com/1471-2296/14/22 On behalf of InSupC: EU FP7 funded project (Ref: 305555) on integrated palliative care in Europ

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease:a systematic literature review of European guidelines and pathways

Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. Methods Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. Results The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients’ goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. Conclusion The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated