Most people with dementia (PwD) are cared for by unpaid family carers, many of whom must balance caring with paid work. This regularly entails dealing with care-related emergencies (CRE). This study aims to explore the impact of carers’ autonomy at work regarding breaks, schedule, and place on their ability to manage CRE, and use technology to that end. We conducted interviews with 16 working carers of PwD in Scotland. Data were analysed thematically to identify key themes. Autonomy at work appeared on a spectrum from no to complete autonomy. Carers’ position on this spectrum was often dynamic and determined by the nature of their work, their workplace culture and regulations, and their line managers’ support – or clients in the case of self-employed carers. Break autonomy allowed carers to use technology to be notified of and delegate the CRE response. Schedule autonomy allowed for an in-person response to CRE. Place autonomy allowed carers to work and care simultaneously, which enabled them to manage CRE immediately but presented them with additional challenges. Distance between workplace and PwD’s residence impacted carers’ ability to manage CRE, despite having complete autonomy. Implications for healthcare professionals, service providers, employers, policymakers, and technology developers are presented.
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The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O’Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discussed.
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Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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The model of the Best Practice Unit (BPU) is a specific form of practice based research. It is a variation of the Community of Practice (CoP) as developed by Wenger, McDermott and Snyder (2002) with the specific aim to innovate a professional practice by combining learning, development and research. We have applied the model over the past 10 years in the domain of care and social welfare in the Netherlands. Characteristics of the model are: the interaction between individual and collective learning processes, the development of (new or better) working methods, and the implementation of these methods in daily practice. Multiple knowledge sources are being used: experiential knowledge, professional knowledge and scientific knowledge. Research is serving diverse purposes: articulating tacit knowledge, documenting the learning and innovation process, systematically describing the revealed or developed ways of working, and evaluating the efficacy of new methods. An analysis of 10 different research projects shows that the BPU is an effective model.
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In many western countries informal care is conceived as the answer to the increasing care demand. Little is known how formal and informal caregivers collaborate in the context of an diverse ageing population. The aim of this study was to gain insight in how professionals’ perspectives regarding the collaboration with informal carers with a migration background are framed and shaped by intersecting aspects of diversity. We used an intersectionality informed qualitative design with informal conversations (N = 12) and semi-structured interviews (N = 17) with healthcare professionals working with clients with Acquired Brain Injury. Two critical friends were involved in the analysis which was substantiated by a participatory analysis with a community of practice. We identified four interrelated themes: (a) ‘The difficult Other’ in which professionals reflected on carers with a migration background causing ‘difficulties’; (b) ‘The dependent Other’ refers to professionals’ realization that ‘difficulties’ are intensified by the context in which care takes place; (c) in ‘The uncomfortable self’ professionals describe how feelings of insecurities evoked by the Other are associated with an inability to act ‘professionally’, and; (d) ‘The reflexive self’ shows how some professionals reflect on their own identities and identify their blind spots in collaboration within a care network. These themes demonstrate the tensions, biases and power imbalances between carers and professionals, which may explain some of the existing health disparities perpetuated through care networks.
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Abstract Background: Nurses are consistently present throughout the rehabilitation of older patients but are apprehensive about performing goal-centred care in the multidisciplinary team. Objectives: The aim of this review was to explore working interventions on setting goals and working with goals designed for nurses in geriatric rehabilitation, and to describe their distinctive features. Methods: We performed a scoping review. We searched MEDLINE and CINAHL through August 4, 2021. Search terms related to the following themes: nurses, rehabilitation, geriatric, goal and method. We used snowballing to find additional. From the selected studies, we systematically extracted data on means, materials and the nursing role and summarized them in a narrative synthesis, using intervention component analysis. Results: The study includes 13 articles, describing 11 interventions which were developed for six different aims: improving multidisciplinary team care; increasing patient centredness; improving disease management by patients; improving the psychological, and emotional rehabilitation; increasing the nursing involvement in rehabilitation; or helping patients to achieve goals. The interventions appeal to four aspects of the nursing profession: assessing self-care skills incorporating patient's preferences; setting goals with patients, taking into account personal needs and what is medically advisable; linking the needs of the patient with multidisciplinary professional treatment and vice versa; and thus, playing an intermediate role and supporting goal achievement. Conclusions: The interventions show that in goal-centred care, the nurse might play an important unifying role between patients and the multidisciplinary team. With the support of nurses, the patient may become more aware of the rehabilitation process and transfer of ownership of treatment goals from the multidisciplinary team to the patient might be achieved. Not many interventions were found meant to support thenursing role. This may indicate a blind spot in the rehabilitation community to the additional value of its contribution.
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We live in a digital society which has significantly changed the information landscape affecting every aspect of our lives. The current wave of technological innovation is part of the context in which social work students, practitioners and service users and carers operate. Technology can improve the quality of our lives and learning and can potentially enrich social work practice but that depends on our active involvement. It will not happen without social workers moulding technology developments and uses to their own and service users' needs. However, the technology can also pose challenges and dangers. This chapter outlines some of the major issues when thinking about the digital society from a social work perspective.
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Stichting Natuurlijk Genieten is a Dutch foundation, founded by Jeannette Bolck, and dedicated to stimulating the development of a more natural living environment for older people living permanently in residential care centres. Many older people, in particular with Alzheimer's, are dependent on activities and facilities, in or in the immediate surroundings, of these centres. Over the past decade Natuurlijk Genieten has taken many initiatives to bring back nature into the daily lives of older people and their carers. In this article these activities are reviewed.
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