Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (or dementia, but there is a lack of clarity about how everyday life is perceived from this insiderinsider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MC I and dementia living at home.
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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.
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"Objectives: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. Methods: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. Findings: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. Conclusions: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support."
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OBJECTIVE: to gain insight into what older adults after hip fracture perceive as most beneficial to their recovery to everyday life.DESIGN: qualitative research approach.SETTING: six skilled nursing facilities.PARTICIPANTS: 19 older community dwelling older adults (aged 65-94), who had recently received geriatric rehabilitation after hip fracture.METHODS: semi-structured interviews were conducted with 19 older adults after hip fracture. Coding techniques based on constructivist grounded theory were applied.RESULTS: four categories were derived from the data: 'restrictions for everyday life', 'recovery process', 'resources for recovery' and 'performing everyday activities'. Physical and psychological restrictions are consequences of hip fracture that older adults have struggled to address during recovery. Three different resources were found to be beneficial for recovery; 'supporting and coaching', 'myself' and 'technological support'. These resources influenced the recovery process. Having successful experiences during recovery led to doing everyday activities in the same manner as before; unsuccessful experiences led to ceasing certain activities altogether.CONCLUSION: participants highlight their own role ('myself') as essential for recovery. Additionally, coaching provides emotional support, which boosts self-confidence in performing everyday activities. Furthermore, technology can encourage older adults to become more active and being engaged in the recovery process. The findings suggest that more attention should be paid to follow-up interventions after discharge from inpatient rehabilitation to support older adults in finding new routines in their everyday activities.A conceptual model is presented and provides an understanding of the participants' experiences and perspectives concerning their process of recovery after hip fracture to everyday life.
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In the Netherlands, where this study was conducted, there are around 800,000 family carers of people with dementia. Research into the needs and priorities of people with dementia and their family carers is crucial for developing tailored care and meaningful support. However, current research lacks attention to the everyday life experiences of caring for someone with dementia at home. Therefore, the research question this study aimed to address was: how do family carers of people with dementia living at home approach and experience their everyday life in a caring context?
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The influence of mutual spousal interrelations in domains such as health and wellbeing has been demonstrated, but little is known about the domain of everyday activities of couples in late life. In the present explorative study, we considered all of the activities participating couples talked about to be their everyday activities. Its aim was to understand, over time, changes in everyday activities as experienced by late-life community-dwelling couples. In a two-year period, 41 individual and joint interviews were conducted with 8 couples, who were purposefully selected from the Longitudinal Aging Study Amsterdam. Analyses involved the construction of couple narratives and constant comparisons within and across couples. Changing everyday activities in late-life couples was interpreted to be a two-way process of (1) converging, and (2) keeping up, which occurred in three fluid phases. Converging was a slow inward movement with a shift towards diminished everyday activities performed in a smaller world. Keeping up was an outward movement in order to resist the converging process by using everyday activities as a means to keep fit, physically and mentally, and to connect with the wider social world. In the first phase, couples maintained their unique linked activity pattern. In the second phase, spouses resisted converging by keeping up. In the third phase, spouses co-performed everyday activities closely together. The findings support the need to develop couple-oriented interventions that aim to enhance the couples' functioning in the domain of everyday activities.
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With a lack of a clear definition, though a normalized use, the discursive weight of the concept of integration is felt throughout policy and civic integration programmes. In wider societal discourse the term integration is used in a taken-for-granted way, with an assumed understanding of its meaning and the actions which one takes to display its attainment. Studies which aim to explore or measure integration, further reproduce these taken-for-granted realities, a fact which has contributed to the recent debates on the discursive power of ‘integration’ in migration studies. While the debate on integration unfolds within the academic sphere, it’s implementation and discursive power continue in practices which take place in everyday life. Practices which construct the ‘doing’ of integration and which shape the lived experiences of those who encounter them. Practices which contribute to the reproduction of Othering and racialized categories which accompany the concept of integration and its current discursive frame. This paper will thus explore how integration as a concept is shaped and promoted in practices, practices such as texts which migrants encounter in civic integration programmes as well as activities which are promoted during the integration pathway. This analysis allows us for an understanding of integration as it lives and is operationalized at the level of practice and enacted through daily activities one undertakes. This critical discourse analysis will shine light on how these practices contribute to strengthening of hierarchical divisions based on colonialist categories of modernity and Eurocentric depictions of a ‘successful’ everyday life.
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Improved cookstoves aimed at reducing exposure to indoor air pollution have had a lasting presence in development and health discussions. Through this article we contribute to current debates in the field by reflecting on our experiences during a cookstove participatory project in two ‘non-notified’ communities, or ‘slums,’ in Bangalore, India. We interrogate the alignment between some of the central tenets and methods of participation and the lived experiences of participating communities. The current predominant recommendations focus on developing and implementing cookstoves tailored for user needs. Yet, the project implementation entered a space of uncertainty where the priorities and needs of participants were diverse and changing. While urban infrastructures related to housing and work security, drainage systems, access to health care, and aspects of governance, citizenship and rights, may seem to fall outside the scope of ICS projects, our experiences show how inescapably they shape participatory processes and technologies. We highlight the need to take a closer look at how we can include these broader and changing priorities and needs in our methodologies and reflect on how we can better respond and align them with the ways in which people live.
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Background The experiences of residents who have communication difficulties such as dysphasia are largely absent from the literature. Aim To illuminate the everyday experiences of four residents with severe communication difficulties living in a residential care setting in the Netherlands. Methodology & Methods A collective case study methodology was used. Seventy-five hours of observation, interview and documentary data was gathered over six weeks. Alternative strategies of communication were developed to enable the co-creation of dialogue between participants and researcher. For example, a participant who could not talk used intentionally created artwork to share her ideas with the researcher. Findings Participants' daily experiences were characterised by struggling against the constraints of the residential setting: having to wait, having unmet needs, experiencing vulnerability and uncertainty. Participants' communication difficulties exacerbated these constraints. Their experiences of struggling were sometimes ameliorated by significant social contact with family or particular staff members, and engaging in enjoyable activities. Occasionally the experiences of enjoying the here-and-now, and being 'seen' as a person by the other, would create beautiful moments in which truly person centred engagement would occur. These moments were neither articulated nor recorded, and were thus invisible after they had occurred. Similarly, the experiences of struggling against the constraints were neither acknowledged nor recorded. Significant experiences in the lives of these four residents were therefore invisible to others. The unifying theme representing the participants' daily experiences was: That which goes unsaid. Discussion It was necessary to develop communication strategies which would by-pass the researcher's assumptions and enable participants to introduce their own ideas and opinions. This ongoing process of co-creation of dialogue required work from, and trust between, participants and researcher. What is new? Expressly seeking the views of residents with communication difficulties Successfully using process consent with participants in this situation Using intentionally created artwork during data gathering in this context What has regional, national or international relevance? The findings indicate that people with communication difficulties may not receive optimal care in residential settings in the Netherlands. Methods are described which could be used by practitioners in their everyday work, and which show facilitators or practice developers how they can help carers to engage in more effective communication with this kind of resident. Additionally, this research contributes to the international discussion about ethical participation of vulnerable people in research.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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