Background: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure.Aims: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps.Materials & Methods: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020.Results: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members’ reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach.Discussion: This scoping review provides insight into a variety of healthcarepractices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families’ well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.
Background: end-of-life care is not always in line with end-of-life preferences, so patients do not always die at their preferred place of death (PPD). This study aims to identify factors associated with patients' PPD and changes in PPD. Methods: we prospectively collected data on PPD at four time points within 6 months from 230 acutely hospitalised older patients who were part of the control group in a stepped-wedge randomised controlled trial. Associations between patient characteristics and preferences were calculated using multivariable (multinomial) logistic regression analysis. Results: the mean age of participants was 80.7 years. 47.8% of the patients had no PPD at hospital admission. Patients previously admitted to hospital preferred to die at home (home versus no preference: odds ratio [OR] 2.38, 95% confidence interval [CI] 1.15-4.92; home versus healthcare facility: OR 3.25, 95% CI 1.15-9.16). Patients with more chronic diseases preferred the healthcare facility as their PPD (healthcare facility versus no preference: OR 1.33, 95% CI 1.09-1.61; healthcare facility versus home: OR 1.21, 95% CI 1.00-1.47). 32 of 65 patients changed their preference during follow-up, and most of these had no PPD at hospital admission (home versus no preference: OR 0.005, 95% CI ≤0.001-0.095) and poorer self-rated well-being (OR 1.82, 95% CI 1.07-3.08). Conclusions: almost half of the patients had no PPD at baseline. Previous hospital admission, having more chronic diseases and living alone are associated with having a PPD. Introducing PPD could make older people aware of PPD and facilitate optimal palliative care.
Background: A transitional care pathway (TCP) could improve care for older patients in the last months of life. However, barriers exist such as unidentified palliative care needs and suboptimal collaboration between care settings. The aim of this study was to determine the feasibility of a TCP, named PalliSupport, for older patients at the end of life, prior to a stepped-wedge randomized controlled trial. Methods: A mixed-method feasibility study was conducted at one hospital with affiliated primary care. Patients were ≥ 60 years and acutely hospitalized. The intervention consisted of (1) training on early identification of the palliative phase and end of life conversations, (2) involvement of a transitional palliative care team during admission and post-discharge and (3) intensified collaboration between care settings. Outcomes were feasibility of recruitment, data collection, patient burden and protocol adherence. Experiences of 14 professionals were assessed through qualitative interviews. Results: Only 16% of anticipated participants were included which resulted in difficulty assessing other feasibility criteria. The qualitative analysis identified misunderstandings about palliative care, uncertainty about professionals' roles and difficulties in initiating end of life conversations as barriers. The training program was well received and professionals found the intensified collaboration beneficial for patient care. The patients that participated experienced low burden and data collection on primary outcomes and protocol adherence seems feasible. Discussion: This study highlights the importance of performing a feasibility study prior to embarking on effectiveness studies. Moving forward, the PalliSupport care pathway will be adjusted to incorporate a more active recruitment approach, additional training on identification and palliative care, and further improvement on data collection.
Chronische pijn is een groot, complex en duur probleem en heeft een grote impact op de kwaliteit van leven van patiënten, dagelijks functioneren, stemming en ziekteverzuim. Er zijn verschillende interventies ontwikkeld die met name gericht zijn op het beïnvloeden en veranderen van het gedrag waarbij zelfmanagement een belangrijke rol speelt. Echter het bestendigen van resultaten op lange termijn blijkt een groot probleem en leidt zelfs tot terugval naar “oud” gedrag waardoor patiënten opnieuw vaak kostbare hulp gaan zoeken. Er zijn twee additionele interventies ontwikkeld in een eerder RAAK-project (SOLACE) ter voorkoming van deze terugval: “Do It Your Self” en “Waarde gerichte Doelen” , echter de werkzaamheid van deze interventies op de lange termijn is niet onderzocht. Een eerste feasibility studie lijkt veelbelovend met positieve effecten naar de bruikbaarheid van deze interventies in de betrokken revalidatiecentra. Vanuit dit werkveld maar ook vanuit de patiënten kwam nadrukkelijk de vraag om deze interventies op effectiviteit te toetsen. Dit heeft geleid tot de onderzoeksvraag; “Is een additionele interventie (do it yourself en/of waarde gerichte doelen) gericht op het blijven toepassen van aangeleerde vaardigheden na een succesvol doorlopen pijn programma effectief in het bestendigen van de resultaten op de lange termijn en leidt dit tot een afname van het zorggebruik.” Het onderzoek wordt uitgevoerd in twee werkpakketten; (1) het ontwikkelen van een bruikbare app voor de ontwikkelde interventies in samenwerking met DIO Design en (2) een effectiviteit studie in de revalidatiecentra Adelante in Hoensbroek en Maastricht, Libra R&A locatie Weert en Heliomare Revalidatie in Wijk aan Zee. De doelstelling van het consortium is om de samen met zorgprofessionals, patiënten, beroepsvereniging en ontwerpers een product ter voorkoming van terugval verder te ontwikkelen en te toetsen. Na afronding van dit project zijn de op effectiviteit getoetste additionele interventies, DIY en WD, klaar om landelijk te worden uitgerold.
Physical rehabilitation programs revolve around the repetitive execution of exercises since it has been proven to lead to better rehabilitation results. Although beginning the motor (re)learning process early is paramount to obtain good recovery outcomes, patients do not normally see/experience any short-term improvement, which has a toll on their motivation. Therefore, patients find it difficult to stay engaged in seemingly mundane exercises, not only in terms of adhering to the rehabilitation program, but also in terms of proper execution of the movements. One way in which this motivation problem has been tackled is to employ games in the rehabilitation process. These games are designed to reward patients for performing the exercises correctly or regularly. The rewards can take many forms, for instance providing an experience that is engaging (fun), one that is aesthetically pleasing (appealing visual and aural feedback), or one that employs gamification elements such as points, badges, or achievements. However, even though some of these serious game systems are designed together with physiotherapists and with the patients’ needs in mind, many of them end up not being used consistently during physical rehabilitation past the first few sessions (i.e. novelty effect). Thus, in this project, we aim to 1) Identify, by means of literature reviews, focus groups, and interviews with the involved stakeholders, why this is happening, 2) Develop a set of guidelines for the successful deployment of serious games for rehabilitation, and 3) Develop an initial implementation process and ideas for potential serious games. In a follow-up application, we intend to build on this knowledge and apply it in the design of a (set of) serious game for rehabilitation to be deployed at one of the partners centers and conduct a longitudinal evaluation to measure the success of the application of the deployment guidelines.
The project aims to improve palliative care in China through the competence development of Chinese teachers, professionals, and students focusing on the horizontal priority of digital transformation.Palliative care (PC) has been recognised as a public health priority, and during recent years, has seen advances in several aspects. However, severe inequities in the access and availability of PC worldwide remain. Annually, approximately 56.8 million people need palliative care, where 25.7% of the care focuses on the last year of person’s life (Connor, 2020).China has set aims for reaching the health care standards of the developed countries by 2030 through the Healthy China Strategy 2030, where one of the improvement areas in health care includes palliative care, thus continuing the previous efforts.The project provides a constructive, holistic, and innovative set of actions aimed at resulting in lasting outcomes and continued development of palliative care education and services. Raising the awareness of all stakeholders on palliative care, including the public, is highly relevant and needed. Evidence based practice guidelines and education are urgently required for both general and specialised palliative care levels, to increase the competencies for health educators, professionals, and students. This is to improve the availability and quality of person-centered palliative care in China. Considering the aging population, increase in various chronic illnesses, the challenging care environment, and the moderate health care resources, competence development and the utilisation of digitalisation in palliative care are paramount in supporting the transition of experts into the palliative care practice environment.General objective of the project is to enhance the competences in palliative care in China through education and training to improve the quality of life for citizens. Project develops the competences of current and future health care professionals in China to transform the palliative care theory and practice to impact the target groups and the society in the long-term. As recognised by the European Association for Palliative Care (EAPC), palliative care competences need to be developed in collaboration. This includes shared willingness to learn from each other to improve the sought outcomes in palliative care (EAPC 2019). Since all individuals have a right to health care, project develops person-centered and culturally sensitive practices taking into consideration ethics and social norms. As concepts around palliative care can focus on physical, psychological, social, or spiritual related illnesses (WHO 2020), project develops innovative pedagogy focusing on evidence-based practice, communication, and competence development utilising digital methods and tools. Concepts of reflection, values and views are in the forefront to improve palliative care for the future. Important aspects in project development include health promotion, digital competences and digital health literacy skills of professionals, patients, and their caregivers. Project objective is tied to the principles of the European Commission’s (EU) Digital Decade that stresses the importance of placing people and their rights in the forefront of the digital transformation, while enhancing solidarity, inclusion, freedom of choice and participation. In addition, concepts of safety, security, empowerment, and the promotion of sustainable actions are valued. (European Commission: Digital targets for 2030).Through the existing collaboration, strategic focus areas of the partners, and the principles of the call, the PalcNet project consortium was formed by the following partners: JAMK University of Applied Sciences (JAMK ), Ramon Llull University (URL), Hanze University of Applied Sciences (HUAS), Beijing Union Medical College Hospital (PUMCH), Guangzhou Health Science College (GHSC), Beihua University (BHU), and Harbin Medical University (HMU). As project develops new knowledge, innovations and practice through capacity building, finalisation of the consortium considered partners development strategy regarding health care, (especially palliative care), ability to create long-term impact, including the focus on enhancing higher education according to the horizontal priority. In addition, partners’ expertise and geographical location was also considered important to facilitate long-term impact of the results.Primary target groups of the project include partner country’s (China) staff members, teachers, researchers, health care professionals and bachelor level students engaging in project implementation. Secondary target groups include those groups who will use the outputs and results and continue in further development in palliative care upon the lifetime of the project.
