In recent years, Dutch authorities have attempted to shift from formal to informal care responsibilities to meet an increasing demand for care. There is a growing expectation that social and healthcare professionals will actively involve, support, and collaborate with partners, family members, and others who provide informal care. However, the practical implementation of such collaborations is not yet evident. In this qualitative study, 37 individual interviews and eight focus groups were conducted to explore the preferences of informal caregivers in the Netherlands regarding their collaboration with social and healthcare professionals. In recognition of the growing consensus that professionals should tailor their approach to caregivers’ individual circumstances, we adopted an intersectional approach to examine the relationship between caregivers’ social positions and preferences as well as the impact of systemic and power dynamics on these collaborations. The findings indicate that most of caregivers’ worries concerning collaborations are rooted in the organisational context of their interactions with professionals rather than the interactions themselves. Caregivers’ social positions do not necessarily lead to varying opinions regarding collaboration with professionals; however, caregivers do expect professionals to be aware of their social positions, as these positions shape the context within which informal care is provided and determine how easily caregivers can integrate care responsibilities into their lives. To enhance collaboration between caregivers and professionals in the short term, care organisations and social and healthcare educational programmes should encourage a professional mindset that recognises caregivers as equal partners in care. It is essential for professionals to acknowledge the caregiver’s role and devise strategies for arranging care together that build on the existing relationship between the caregiver and care recipient.
Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over http://www.jmir.org/2020/2/e13001/ J Med Internet Res 2020 | vol. 22 | iss. 2 | e13001 | p. 1 (page number not for citation purposes) JOURNAL OF MEDICAL INTERNET RESEARCH Huis in het Veld et al XSL•FO RenderX time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required.
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BACKGROUND: Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.METHOD: We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.RESULTS: The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.CONCLUSIONS: Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
Dutch society faces major future challenges putting populations’ health and wellbeing at risk. An ageing population, increase of chronic diseases, multimorbidity and loneliness lead to more complex healthcare demands and needs and costs are increasing rapidly. Urban areas like Amsterdam have to meet specific challenges of a growing and super divers population often with a migration background. The bachelor programs and the relating research groups of social work and occupational therapy at the Amsterdam University of Applied Sciences innovate their curricula and practice-oriented research by multidisciplinary and cross-domain approaches. Their Centres of Expertise foster interprofessional research and educational innovation on the topics of healthy ageing, participation, daily occupations, positive health, proximity, community connectedness and urban innovation in a social context. By focusing on senior citizens’ lives and by organizing care in peoples own living environment. Together with their networks, this project aims to develop an innovative health promotion program and contribute to the government missions to promote a healthy and inclusive society. Collaboration with stakeholders in practice based on their urgent needs has priority in the context of increasing responsibilities of local governments and communities. Moreover, the government has recently defined social base as being the combination of citizen initiatives, volunteer organizations , caregivers support, professional organizations and support of vulnerable groups. Kraktie Foundations is a community based ethno-cultural organization in south east Amsterdam that seeks to research and expand their informal services to connect with and build with professional care organizations. Their aim coincides with this project proposal: promoting health and wellbeing of senior citizens by combining intervention, participatory research and educational perspectives from social work, occupational therapy and hidden voluntary social work. With a boundary crossing innovation of participatory health research, education and Kraktie’s work in the community we co-create, change and innovate towards sustainable interventions with impact.
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.
The findings suggests that participation in music practices can significantly support caregivers' and nurses' contact with the people to whom they give care and the healthcare professionals' insights into the patients' and residents' personhood. Music can create experienced changes in the care environment through kairotic moments of connectivity and intimacy of the musical interaction. The music sessions support and reinforce the person-centred values of care delivery.The meaning of participatory music practices for the well-being and learning of healthcare professionals working with ageing patients and nursing home residents.
