Search

Poster van het project Samen optrekken

Vragenlijst bij het project Samen optrekken inclusief de handleiding vragenlijst bewoner.

Tips voor betekenisvolle relaties met naasten. Gebaseerd op het project Samen optrekken.

Poster van het project Samen optrekken over de samenwerking met Laurens in Delfshaven Rotterdam.

Poster van het project Samen optrekken over de samenwerking met Florence in Duinhage Den Haag.

De COM-interventie helpt naasten en verpleegkundigen inzichtelijk te krijgen welke ondersteuning naasten nodig hebben om palliatieve zorg thuis zo lang mogelijk vol te houden.

Objective: Family caregivers are often intensively involved in palliative and end‐oflife cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. Methods: A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. Results: Out of 7957 titles, 32 studies were included. Twenty‐two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n = 15), family caregiver‐patient dyads (n = 11), families (n = 2) and peer groups (n = 4). Most interventions (n = 26) were delivered face‐to‐face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self‐care. Twenty‐nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho‐emotional (n = 24), daily functioning (n = 13) and social dimension (n = 6). Individual interventions were mainly effective in the psycho‐emotional dimension, dyad and family interventions in the psycho‐emotional and social domain, and group interventions mainly had an effect on daily functioning. Conclusions: Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions.

Hoofdstuk in boek Probleemgeoriënteerd denken in de palliatieve zorg. Sander de Hosson, Sabine Netters, Marieke Ausems, Alexander de Graeff, Daisy Janssen (red.) Uitgeverij De Tijdstroom / Boommedisch. Palliatieve zorg is een belangrijk onderdeel van de beroepsuitoefening van vrijwel elke arts, verpleegkundige of verzorgende en verdient een basisplek in elke medische of verpleegkundige opleiding. Die positie had het in het verleden niet, maar met name in de laatste twee decennia heeft de palliatieve zorg de plaats verworven die het veel langer verdiende. In deze tweede, geheel herziene druk van Probleemgeoriënteerd denken in de palliatieve zorg is er naast de somatische aspecten ook aandacht voor de psychosociale en spirituele domeinen van palliatieve zorg.

Samen optrekken in de ouderenzorg; veel ouderen, hun naasten en zorgverleners vinden dat best lastig. Feit is dat de noodzaak tot gelijkwaardige samenwerking tussen formele (professionele) en informele hulp groeit. Dat stelt ook de Raad voor Volksgezondheid en Samenleving in haar rapport Anders Leven en Zorgen (2022). Grote vraag is dan ook: wat maakt dat samen optrekken nu nog niet vanzelfsprekend is, en hoe ze dat wel kan worden?

Participation of residents and their families in long-term care facilities does not come naturally. Nurses often do not see promoting it as their task. We hypothesised that participation of a resident and his family, and meaningful caring relationships are interrelated.

The Intensive Care Unit (ICU) is characterised by high tech and absence of intimacy and often lacks a structured palliative care approach for bereavement support for relatives. We developed practical tools for ICU-nurses in the Netherlands to support relatives of dying patients in the ICU.

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2–3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say farewell, and of social support. We identified five ways in which the three COVID-19 related loss experiences interacted: overshadowed grief, cumulative grief, triggered grief, derailed grief, and conciliatory grief. This study demonstrated that pre-COVID-19 diagnoses and understandings of grief are not sufficient to picture grief during and after the COVID-19 pandemic. These grief experiences are more complex and deserve further exploration.

Objectives The objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands. Methods An in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care. Maximum variation sampling was used. Data were analysed following the principles of thematic analysis. Results Several aspects impacted the quality of the palliative care approach to care at the end of life. First, COVID-19 was a new disease and this led to challenges in the physical domain of end-of-life care, for example, a lack of knowledge on how to manage symptoms and an unreliable clinical view. Second, the high workload HCPs experienced impacted the quality of end-of-life care, especially in the emotional, social and spiritual domains, since they only had time for urgent, physical care. Third, COVID-19 is a contagious disease and measures taken to prevent the spread of the virus hampered care for both patients and relatives. For example, because of the visiting restrictions, HCPs were not able to provide emotional support to relatives. Finally, the COVID-19 outbreak also had a potentially positive impact in the longer term, for example, more awareness of advance care planning and the importance of end-of-life care that includes all the domains. Conclusion The palliative care approach, which is key to good end-of-life care, was often negatively influenced by the COVID-19 pandemic, predominantly in the emotional, social and spiritual domains. This was related to a focus on essential physical care and prevention of the spread of COVID-19.

Sommige mensen met langdurige aandoeningen hebben ondersteuningsbehoeften op vele terreinen. Dat heeft grote impact op hun dagelijks leven. Zeggenschap en autonomie zijn dan essentieel voor de cliënt.

Erica Witkamp heeft een rijke staat van dienst in de palliatieve zorg. Ze was onder meer verpleegkundige in de thuiszorg en afdelingshoofd van de Palliatieve Zorg Unit van de Daniel den Hoed Kliniek in Rotterdam. Tegenwoordig werkt ze als onderzoeker bij het Erasmus MC en is ze lector Zorg om Naasten aan de Hogeschool Rotterdam.

Background Family caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking. Aim To gain insight in nurses' reports on the supportive care for family caregivers. Methods We studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed. Results 54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported. Conclusion Only half of the nursing files contained information about supportive nursing care for family caregivers. Complete nursing documentation of provided care to family caregivers is needed.

Aim To evaluate the feasibility of a structured nurse‐led supportive intervention and its effects on family caregivers in end‐of‐life care at home. Background Family caregivers are crucial in end‐of‐life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse‐led interventions are available to support family caregivers in end‐of‐life care at home. Design We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. Methods The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self‐Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. Impact Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end‐of‐life care.

Verpleegkundigen en verzorgenden kunnen zelfmanagement of zelfred-zaamheid ondersteunen bij mensen met een chronische ziekte. Vaak vinden zij dit wel lastig. De onderzoekers gingen daarom na wat op drie afdelingen het effect was van een gesprekshulpmiddel om ondersteuningsbehoeften van zorgvragers in beeld te krijgen.

De naam van dit lectoraat lijkt zo simpel. Maar wat zeggen de drie woorden ‘zorg om naasten’ nou eigenlijk? Het is mijn bedoeling om de betekenis daarvan in deze openbare les duidelijk te maken. Wie of wat zijn naasten? Waarom zorg om naasten, en niet voor of met? En wie moeten zich zorgen maken om naasten?

Confrontatie met patiënten in de palliatieve fase is in de oncologie onvermijdelijk, maar wat betekent dit voor studenten verpleegkunde en beginnende verpleegkundigen? En hoe kan worden voorkomen dat ze door emotionele uitputting voortijdig stoppen met de opleiding of op zoek gaan naar een andere baan? In dit artikel worden de uitkomsten beschreven van een serie onderzoeken van studenten van de opleiding Verpleegkunde aan Hogeschool Rotterdam.

Diverse studies richten zich op het in kaart brengen van de hoge belasting van zorgverleners in palliatieve zorg, en op de vraag hoe ze ondersteund kunnen worden in de omgang hiermee. We gaan in op drie van deze studies en pleiten voor meer samenwerking rond 'zorg voor de zorgenden'.

Background Family caregivers are crucial in end-of-life care. However, family caregiving may involve a significant burden with various negative health consequences. Although nurses are in a unique position to support family caregivers at home, little is known about which nursing interventions are effective in this context. Therefore, this study aims to provide insight into nursing interventions currently available to support family caregivers in end-of-life care at home and to describe their effects. Methods A systematic search was conducted in Embase, Medline Ovid, Web of Science, Cochrane Central, CINAHL and Google Scholar. This review included quantitative studies published from January 2003 until December 2018 reporting on nursing interventions to support adult family caregivers in end-of-life care at home. Data were extracted on intervention modalities, intervention components, and family caregivers’ outcomes. Methodological quality of the studies was assessed with the Cochrane Risk of Bias Tool. Results Out of 1531 titles, nine publications were included that reported on eight studies/eight interventions. Of the eight studies, three were randomised controlled trials, one a pilot randomised trial, one a non-randomised trial, and three were single-group prospective studies. Four intervention components were identified: psychoeducation, needs assessment, practical support with caregiving, and peer support. Psychoeducation was the most commonly occurring component. Nursing interventions had a positive effect on the preparedness, competence, rewards, and burden of family caregivers. Multicomponent interventions were the most effective with, potentially, the components ‘needs assessment’ and ‘psychoeducation’ being the most effective. Conclusions Although only eight studies are available on nursing interventions to support family caregivers in end-of-life care at home, they show that interventions can have a positive effect on family caregivers’ outcomes. Multicompo

Kunnen we met onze gemoedstoestand apparaten beïnvloeden? Welke bruikbare stoffen kun je uit urine halen? Kun je Artificial Intelligence om de tuin leiden? Hoe ontstaat en verandert een taal? Zomaar greep uit de vragen die de wetenschappers van LL Science tijdens Lowlands 2019 proberen te beantwoorden. Met elf onderzoeksprojecten vanuit het hele land, een dagelijkse talkshow en de Nationale wetenschapsquiz is het wetenschappelijke deel van Lowlands 2019 weer goed gevuld. De editie van dit jaar vindt plaats van 16 tot en met 18 augustus op evenemententerrein Walibi Holland in Biddinghuizen. Innovation Origins

Wat is een mooiere plek om het leven te vieren dan Lowlands? Voor duizenden jongeren was het de afgelopen dagen de ideale locatie voor een weekend lang feest. Weer of geen weer. Toch werd er tijdens het muziekfestival ook stil gestaan bij de dood. Hogeschool Rotterdam en Erasmus MC deden op Lowlands Science onderzoek naar de betekenis van de dood in het leven van de Lowlands-ganger.

Niemand ontkomt aan de grijpgrage handen van Magere Hein. Er komt een moment dat ook jij je laatste adem uitblaast. De dood is onlosmakelijk verbonden met het leven, maar we krijgen er zelf gek genoeg helemaal niks van mee. Daarom kun je in de Dooie Hoek op Lowlands 2019 alvast proefliggen in een eikenhouten doodskist.

Kunnen we met onze gemoedstoestand apparaten beïnvloeden? Welke bruikbare stoffen kun je uit urine halen? Kun je artificial intelligence om de tuin leiden? Hoe ontstaat en verandert een taal? Zomaar greep uit de vragen die de wetenschappers van Lowlands Science tijdens Lowlands 2019 proberen te beantwoorden. New Scientist https://newscientist.nl/blogs/wetenschap-op-lowlands-2019

Stichting Fibula had, een jaar na uitgave van de Handreiking minimale eisen netwerken palliatieve zorg de wens om een eerste indruk te krijgen van de mate waarin de vier kerntaken van de NPZ nu reeds geborgd zijn in het veld. Ook wilde ze weten hoe de netwerken invulling geven aan regionaal maatwerk in verhouding tot het hiervoor genoemde uitgangspunt van het NPPZ. Stichting Fibula heeft hiervoor samen met Kenniscentrum Zorginnovatie van Hogeschool Rotterdam het onderzoeksproject ‘Tot de Kern’ opgezet. Dit document is de eindrapportage. Het bevat de voornaamste uitkomsten en is bedoeld om Stichting Fibula input te geven voor het meerjarenbeleid.

Hospital care and communication tend to be focused on the individual patient, and decision making is typically based on the principle of individual autonomy. It can be questioned whether this approach is adequate when a patient is terminally ill.

When patients die relatives and healthcare professionals may appreciate the quality of the dying phase differently, but comparisons are rare. In a cross-sectional study (June 2009–July 2012) the experiences of bereaved relatives, physicians, and nurses concerning the quality of dying in a large Dutch university hospital were compared, and the relation to communication was explored. Measurements were concordance on the quality of dying (QOD) (0–10 scale), awareness of impending death, and end-of-life communication. Results. Data on all three perspectives were available for 200 patients. Concordance in general was poor. Relatives’ scores for QOD (median 7; IQR 5–8) were lower than physicians and nurses’ (both median 7; IQR 6–8) (P =0,002). 48% of the relatives, 77% of the physicians, and 73% of the nurses had been aware of impending death. Physicians more often reported to have informed patients and relatives of end-of-life issues than relatives reported. When both physicians and relatives reported about such discussion, relatives’ awareness of impending death and presence at the patient’s deathbed were more likely. Conclusion. Relatives, physicians, and nurses seem to have their “own truth” about the dying phase. Professionals should put more emphasis on the collaboration with relatives and on verification of relative’s understanding.

Wat er gebeurt en Wat er toe doet. Onderzoek naar Palliatieve en Terminale zorg in het Ziekenhuis (PalTeC-H)

Patiënten die zijn opgenomen in het ziekenhuis kunnen als complicatie een delirium ontwikkelen bij een lichamelijke ziekte of na een operatie. Delirium is een staat van acute verwardheid, die van voorbijgaande aard is. Een delirium kan echter op lange termijn wel schadelijke gevolgen hebben, zoals het ontstaan van dementie.

Background: Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. Methods/Design: We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. Discussion: Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. Trial registration: Nederlands Trial Register: NTR4454. Keywords: Advance care planning, Advance directives, Respecting choices, Elderly care, Cost-effectiveness, Quality of life, Patient activation

Background: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions.

Context Most deaths in Western countries occur in hospital, but little is known about factors determining the quality of dying (QOD). Objectives The aim was to assess the QOD in hospital as experienced by relatives and identify factors related to QOD. Methods A cross-sectional study on 18 wards of a university hospital in The Netherlands was conducted, including relatives of patients who died after an admission of more than six hours, from June 2009 to March 2011. Relatives' perceptions of QOD and quality of care and the relation between dimensions of QOD and overall QOD scores were assessed. Results Two hundred forty-nine relatives participated (51%) and rated overall QOD at 6.3 (SD 2.7; range 0–10). According to relatives, patients suffered from 7.0 (SD 5.8) of 22 symptoms and were at peace with imminent death in 37%. Patients had been aware of imminent death in 26%, and relatives were aware in 49%. Furthermore, 39% of patients and 50% of relatives had said good-bye, and 77% of patients died in the presence of a relative. Symptom alleviation was sufficient in 53%, and in 75%, sufficient efforts had been made to relieve symptoms. Characteristics of QOD and quality of care could be summarized in nine domains, explaining 34% of the variation of QOD scores. Medical, personalized, and supportive care were most strongly related to QOD. Conclusion Relatives rated QOD as sufficient. A majority of patients and relatives were not sufficiently prepared for imminent death, and relatives experienced many problems. QOD appears to be a multidimensional construct, strongly affected by medical care and staff attentiveness. Key Words

The purpose of this study was the psychometric testing of a questionnaire to assess nurses’ opinions, subjective norms, perceived difficulties, and knowledge related to palliative care. The 63-item MOVE2PC Questionnaire was tested among 219 nurses in groups differing in education and experience. The intra-rater agreement was moderate to good (k > .5kmax), and internal consistency was good (alpha ¼ .77). Construct validity was demonstrated by between-groups differences in knowledge, opinions, and perceived difficulties. Responsiveness was shown by improved scores after an education program. Time of completion was 20 minutes, and 99% skipped at most five items, demonstrating feasibility. Findings support the usefulness of the instrument for assessing nurses’ knowledge and views on palliative care. Copyright 2013 Wiley Periodicals, Inc. Res Nurs Health 36:512–523, 2013