Visual and material representations of ageing, space and rhythms in everyday life.

A focus on the materiality within ageing studies brings into focus the material dimensions of space, rhythms and material objects in everyday life. The aim of this paper is to explore meanings around space in the context of the daily lives of people growing older and how materiality is embodied, embedded and performed in the material and social context of our everyday lives. The paper draws on data from the empirical research study Photographing Everyday Life: Ageing, Lived Experiences, Time and Space funded by the ESRC, UK. The focus of the project was to explore the significance of the ordinary and day-to-day and focus on the everyday meanings, lived experiences, practical activities, and social contexts in which people in mid-to-later life live their daily lives. The research involved a diverse sample of 62 women and men aged 50 years and over who took photographs of their different daily routines to create a weekly visual diary. The data reveals three interconnecting whilst analytically distinct themes within the materiality of ageing and the spaces around everyday life: (1) Space, materiality and everyday life; (2) Rhythms, routines and materiality; and (3) Social and material connectivity. The paper concludes by highlighting a complex engagement with space, in which participants drew and re-drew boundaries surrounding meanings of space, sometimes within the same interview or even within a discussion of the same photograph. Moreover, a focus on materiality has elicited rich and illuminating accounts of how people in mid-to-later life experience the intersections between ageing, bodies, time and space in their everyday lives.

'There are things I have learned the hard way' Patient experiences on lasting challenges 4 months after Transient Ischemic Attack: A qualitative study.

BACKGROUND: Fatigue, depression, anxiety and cognitive difficulties are reported by 1/3 of patients following transient ischemic attack (TIA). AIMS: To explore the timeline and how the diagnosis impacts individuals experiencing lasting challenges after TIA. Furthermore, to identify what they believed facilitated return to everyday life. DESIGN: Qualitative exploratory study with a phenomenological-hermeneutic approach. METHODS: Individual semi-structured interviews and thematic analysis. RESULTS: Fifteen patients were included. Four themes were identified; (1) 'They say it is transient - no, not for me' where all participants described lasting challenges emphasizing invalidating fatigue and impaired social participation, (2) 'I am a changed person; how does this impact my future?' which reflects altered identity and elevated alertness to symptoms, (3) 'Time has been my ally and new perspectives have evolved' where most participants described improvement over time and a few considered the diagnosis a wake-up call to change lifestyle. Lastly (4) 'What would have helped me recover?' which unfolds that close, trustful relations influence positively. In addition, the system often failed to support. Participants described pressure to return to work and lack of trust and negative experiences when involving their general practitioner. CONCLUSIONS: During the 4 months since diagnosis, participants experienced limitations impacting physical, psychological and social domains. They felt uninformed that lasting challenges could affect them. Different coping strategies were activated, and participants with close, supportive relations managed better. A pressure to return to work and a lack of trust in the general practitioner affected their recovery negatively. Overall, return to everyday life after TIA was considered stressful and appropriate support lacking. RELEVANCE TO CLINICAL PRACTICE: To be able to support patients with challenges following TIA, we as healthcare professionals need to understand the identified impact and life changing circumstances. Currently the system seemingly is not able to provide timely, sufficient and competent support. IMPACT (ADDRESSING): WHAT PROBLEM DID THE STUDY ADDRESS?: We know from the literature that up to 1/3 of patients following transient ischemic attack experience lasting challenges measured on a variety of questionnaires. This is paradoxical to a diagnosis defined by focal neurological symptoms that resolve within 24 h. It is unknown how patients with lasting challenges experience the timeline from diagnosis and until 4 months after, how the diagnosis impacts the lives of these individuals, and what they believe as beneficial in returning to their everyday life. WHAT WERE THE MAIN FINDINGS?: These participants with self-reported lasting challenges experienced substantial impacts on physical, psychological and social domains. Further, they felt alone with their struggles and when in need of support from the healthcare system, it failed to provide this. A pressure to return to work and a lack of trust in the general practitioner affected return to everyday life negatively, whereas close and supportive relations facilitated positively. WHERE AND ON WHOM WILL THE RESEARCH HAVE AN IMPACT?: This study will have an impact on the healthcare professionals that provide support and the (limited) follow-up services to patients after TIA. These healthcare professionals are often specialized nurses who need to know what these patients experience and need in order to act upon their struggles and provide timely support. REPORTING METHOD: The Standards of Reporting Qualitative Research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: Patients with TIA was involved in planning this study. They participated in a panel to plan a prospective observational cohort study and emphasized the importance of exploring the subjective perspectives of impact and prognosis for those patients struggling in a longer term (through qualitative interviews).

The Internet-Based Intervention Strategies for Empowering Activities in Everyday Life: Qualitative Study of Experiences of Clients With Stroke.

BACKGROUND: There is a need to enhance access to and support for self-management of activities in everyday life after a stroke. Internet-based solutions have the potential to contribute to this development. Consequently, an internet-based intervention called Strategies for Empowering Activities in Everyday Life (SEE) was developed. The intervention aims to assist clients in developing management strategies that promote a healthy distribution and balanced engagement in various activities performed in different places and with other people. To further support the development and feasibility of this intervention, more knowledge is needed about clients' experiences during the intervention process. OBJECTIVE: This study aims to explore and describe how clients with stroke experienced the SEE intervention process and whether participation in SEE influenced their experience of everyday life. METHODS: Overall, 9 clients with stroke who received SEE participated in the study-4 (44%) women and 5 (56%) men aged 37 to 73 years. Qualitative interviews about experiences with SEE were conducted twice during the intervention process with each participant. The data were analyzed using the constant comparative method of grounded theory. RESULTS: The participants' experiences with the intervention process of SEE formed the core category, conceptualized as The relevance of and readiness for entering a change process in activities of everyday life differ among clients, constituting of two main categories: (1) an eye-opener providing agency for a change process and (2) never beginning a change process in activities in everyday life. The results showed that the relevance of and readiness for SEE differed between the participants. The experiences of 78% (7/9) of the participants reflected that the intervention process provided them with an agency to drive their own change process for activities in everyday life to promote health. Overall, 22% (2/9) of the participants refrained from entering a change process during SEE as they did not recognize any need for changes in their activities. When SEE was relevant and adopted as expected, the participants described it as an eye-opener for how they can alter their health based on how they distribute and spend their time on various activities. CONCLUSIONS: SEE has the potential to support clients' development of self-management and to take an active role in influencing their engagement in activities in everyday life and health. This study identified necessary improvements in the educational program for professionals to enhance delivery and strengthen the therapeutic mechanisms of SEE for future research. To effectively implement internet-based interventions such as SEE, it is crucial to identify clients who express a need for self-management in activities and are ready to invest the effort required to adopt a change process. Furthermore, it is indicated that participants' self-analysis of their everyday activities empowers them to adopt new self-management strategies, which can also benefit other interventions.

The missing piece. Physiological data as a factor for identifying emotions of people with profound intellectual and multiple disabilities.

Introduction: The preferences of people with profound intellectual and multiple disabilities (PIMD) often remain unfulfilled since it stays challenging to decode their idiosyncratic behavior resulting in a negative impact on their quality of life (QoL). Physiological data (i.e. heart rate (variability) and motion data) might be the missing piece for identifying emotions of people with PIMD, which positively affects their QoL. Method: Machine learning (ML) processes and statistical analyses are integrated to discern and predict the potential relationship between physiological data and emotional states (i.e. numerical emotional states, descriptive emotional states and emotional arousal) in everyday interactions and activities of two participants with PIMD. Results: Emotional profiles were created enabling a differentiation of the individual emotional behavior. Using ML classifiers and statistical analyses, the results regarding the phases partially confirm previous research, and the findings for the descriptive emotional states were good and even better for the emotional arousal. Conclusion: The results show the potential of the emotional profiles especially for practitioners and the possibility to get a better insight into the emotional experience of people with PIMD including physiological data. This seems to be the missing piece to better recognize emotions of people with PIMD with a positive impact on their QoL.

Exploring young adults' experiences with food allergy during their teenage years: A practice research study.

INTRODUCTION: Symptoms of anxiety, eating disorders and social isolation are prevalent among teenagers with food allergy compared to peers without. Treatment of teenagers with food allergy focus on preventing anaphylactic reactions, with little attention to promoting social and emotional well-being. The aim of the study was to explore young adults' perspectives on everyday life with food allergy during their teenage years to improve future clinical practice. METHODS: Critical psychological practice research. During a 2-day camp the perspectives of 10 young adults (18-23 years) were explored through participant observation and informal interviews. Three follow up interviews were conducted. A co-researcher group discussed preliminary results, clinical challenges and ways forward. RESULTS: Being together with peers with food allergy was crucial, fostering belonging and normalisation. The shift in responsibility of managing the risk feels overwhelming and stressful during teen age. Self-understanding was influenced when managing food allergy in social contexts, inducing feelings of burden and isolation. Acceptance and understanding from social relations became important for all participants, and they all underlined desire for being viewed as individuals rather than being defined by their allergy. CONCLUSION: Support from other peers with food allergy is crucial for the participants. Transition to independently managing risks introduces uncertainty and social constraints, affecting self-understanding and interactions. Clinicians should prioritise peer support and empower teenagers in managing the risk and psychosocial challenges.

The population of Veneto faced with technological consumption of music during the pandemic.

Objective: This work is the result of one of the lines of research opened in the LabinTic group (UCLM) and a stay in the city of Padua, in the Italian Veneto area, in 2022. After observing the side effects in Italy as a result of COVID-19 and the Great Lockdown, we wanted to know in more depth some aspects related to how the people of Veneto used IT as an important weapon to fight against forced isolation and, if possible, compare this with other similar studies performed in Castilla-La Mancha. Method: To achieve this objective, an ad hoc questionnaire was designed and validated through expert judgment. This questionnaire was administered to a random probabilistic sample by disseminating it through social media and email using the "snowball" method. A total of 338 people who comprised the population sample of the study (n = 338) were obtained. After analyzing the data through SPSS 28, using a mixed methodology considering qualitative and quantitative aspects, the great influence that IT had among the Italian population during the lockdown common aspects of their everyday lives and incorporating some acquired habits (listening to music, for example) into their usual life routines after the return to normality was determined among other features and assessments. In summary, the text highlights how the pandemic influenced music consumption, the popularity of different music genres, the role of social media, and the enduring importance of the music itself in people's lives. It suggests that music remains a source of comfort and entertainment in challenging times.

Embodied leisure experiences of nature-based activities for people living with dementia.

PURPOSE: This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health. DESIGN/METHODOLOGY/APPROACH: Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis. FINDINGS: The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of 'bodily feelings and emotions', 'sense of self and identity' and 'connectivity to others'. ORIGINALITY/VALUE: The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.

Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury.

PURPOSE: To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. MATERIALS AND METHODS: Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. RESULTS: Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities' administration of the service. Participants explained this by an experience of a sense of coherence. CONCLUSION: For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one's life by enhancing one's sense of coherence.

Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness.Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations.To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them.

Cognitive training interventions for substance use disorders: what they really offer?

Cognitive training (CT) has emerged as a potential therapeutic approach for substance use disorders (SUD), aiming to restore cognitive impairments and potentially improve treatment outcomes. However, despite promising findings, the effectiveness of CT in real-life applications and its impact on SUD symptoms has remained unclear. This perspective article critically examines the existing evidence on CT for SUD and explores the challenges and gaps in implementing CT interventions. It emphasizes the need for clarity in expectations and decision-making from a public health standpoint, advocating for comprehensive studies that consider a broader range of SUD consequences and utilize measures that reflect patients' actual experiences.

Cured but not well - haematological cancer survivors' experiences of chemotherapy-induced peripheral neuropathy in everyday life: a phenomenological-hermeneutic study.

PURPOSE: To explore haematological cancer survivors' experience of chemotherapy-induced peripheral neuropathy (CIPN) in everyday life. METHODS: Data were generated by means of individual semi-structured interviews with 12 haematological cancer survivors who experience CIPN after completion of treatment. Data were analysed using thematic analysis. RESULTS: The thematic analysis yielded an in-depth description of the experience of CIPN symptoms and the influence of the symptoms on everyday life as being unwell despite being cured. Four main themes emerged from the analysis: (1) A diffuse and contradictory sensation which is impossible to ignore in everyday life, (2) Not feeling well, even though I'm cured, (3) Living with CIPN, despite limitations, and (4) An invisible companion, that everybody knows about. CONCLUSION: The findings shows that survival from haematological cancer does not always equal well-being, as experiencing CIPN has extensive consequences on everyday life. CIPN affects haematological cancer survivors' transition to an ordinary everyday life, with disturbances in the physical function, daily activities, social relationships, psychological aspects, and work ability. As a diffuse and contradictory symptom, CIPN appears as an invisible companion that leads to a feeling of being alone. IMPLICATIONS FOR CANCER SURVIVORS: A better and deeper understanding of haematological cancer survivors' experience of CIPN in everyday life may improve communication, guidance, and treatment of CIPN symptoms. The results suggest a need for interventions and strategies to accommodate the gap in practice and to address the impact of CIPN in everyday life.

Living with a person with young onset dementia - spousal experience.

PURPOSE: Being of working age while at the same time needing to help a partner with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this particular group of spouses. The aim of the study was to explore spouses' everyday experiences when living with a person with young onset dementia. METHOD: The study had a descriptive qualitative design with semi-structured interviews with nine spouses. The interviews were analysed using content analysis. RESULT: The interviewed spouses experienced emotions that varied from feelings of loneliness, frustration, and worry to peace of mind. They said that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also felt that they could use more support, both formal and informal. CONCLUSION: The spouse of a person with young onset dementia has a range of emotional experiences and has resourceful ways of handling everyday life. Various types of support are offered to spouses, however, they seemed to desire more from health care services.

Children as next of kin's experiences, practices, and voice in everyday life: a systematic review of studies with Norwegian data (2010-2022).

Aims: This systematic review aims to identify and describe how children of parents with mental illness, substance dependence, or severe physical illness/injury, experience and practise their everyday life. Methods: The review followed the four stepwise recommendations of Harden and colleagues when including quantitative and qualitative studies on peoples' experiences and views. In all, 23 studies with data from Norway (2010-2022) have been included. Brown and Clark's thematic analysis was applied. Results: Three themes were constructed from the reviewed articles: (a) Children practice their relational agency by actively doing practical tasks, occasionally jobs to maintain family economy, and organising fun activities with the ill parent. (b) Emotional ambivalence when their own needs were set aside in favour of the parents. They loved their parents but also felt guilt, anger, disappointment, shame, fear of inheriting the illness and longed for a 'normal' everyday life. (c) Supportive contextual factors were, for example, at least one significant adult recognising them, participating in leisure activities, socialising with friends, and talking with other peers who shared similar experiences as next of kin. Obstructive factors were lack of information and recognition as well as silence and lack of dialogue within the family and/or health professional. Conclusions: There is a strong need for more knowledge and competence on the situation and needs of these children when it comes to professionals, parents and the public. Public health initiatives are needed to honour their agency and recognise their contributions in present time to prevent psychosocial problems later in life.

Navigating work and life- a qualitative exploration of managers' and employees' views of return-to-work after sick leave due to common mental disorders.

BACKGROUND: Incorporating multiple perspectives and contexts in knowledge mobilisation for return-to-work after sick leave due to common mental disorders can promote interprofessional and organisational strategies for facilitating the return-to-work process. This study aimed to explore the facilitators of and barriers to return-to-work after common mental disorders. This exploration considered the perspectives of employees and managers and the realms of work and private life. METHODS: A qualitative approach was used with data from 27 semi-structured telephone interviews. The strategic sample consisted of employees who returned to work after sick leave due to common mental disorders (n = 17) and managers responsible for their return-to-work process (n = 10). Thematic analysis conducted in a six-step process was used to generate themes in the interview data. RESULTS: The analysis generated three main themes with subthemes, illustrating experiences of barriers to and facilitators of return-to-work positioned in the employees' private and work contexts: (1) Getting along: managing personal difficulties in everyday life; (2) Belonging: experiencing social connectedness and support in work and private life; and (3) Organisational support: fostering a supportive work environment. The results contribute to a comprehensive understanding of the return-to-work process, including the challenges individuals face at work and in private life. CONCLUSIONS: The study suggests that return-to-work after sick leave due to CMDs is a dynamic and ongoing process embedded in social, organisational, and societal environments. The results highlight avenues for an interprofessional approach and organisational learning to support employees and managers, including space for the employee to recover during the workday. TRIAL REGISTRATION: This study recruited employees from a two-armed cluster-randomised controlled trial evaluating a problem-solving intervention for reducing sick leave among employees sick-listed due to common mental disorders (reg. NCT3346395).

Management of everyday life after a hand operation-A qualitative study of patients with a weak sense of coherence.

BACKGROUND: A hand-related disorder (HRD) has a more significant impact on participation in everyday life for patients with a weak sense of coherence (SOC) compared to those with a strong SOC. Therefore, understanding how patients with a weak SOC manage the conditions of everyday life after a hand operation is of clinical interest. PURPOSE: This study aimed to explore how patients with a weak SOC experience and manage the conditions of everyday life after an operation for an HRD. STUDY DESIGN: A qualitative design with a hermeneutic approach. METHODS: An in-depth interview was conducted with each of eight adults-five women and three men-with an HRD and a weak SOC (SOC-13 score <52). Participants with varying HRDs were interviewed once between six and 13 weeks after the hand operation. Data were analyzed based on a hermeneutic approach. RESULTS: The analyses resulted in five themes: even more conditions to handle, challenges in everyday life, managing everyday life, different expectations, and the influence of information on everyday life. The lives of most participants were significantly impacted: they experienced a range of difficulties managing their activities and roles after their operation. The participants felt uncertain about managing everyday life and the future and expressed unfulfilled expectations for different reasons. All wanted individualized information about what to expect. CONCLUSIONS: Participants had several conditions in life that challenged their everyday lives, and the HRD made their everyday lives even more challenging. The extent to which they felt affected appeared to relate to their perception of their presurgery activities. They had several strategies to manage everyday life but used these to varying extent. Their expectations about the outcome had both positive and negative effects on their ability to manage everyday life, and individually adapted information was requested about what to expect and how to cope with everyday life after the surgery.

Experiences of meaningful occupation among diverse populations - A qualitative meta-ethnography.

BACKGROUND: Few studies synthesising knowledge about meaningful occupation are available. Meta-ethnography allows the synthesising of a variety of empirical findings and translational knowledge may be developed. AIM: Investigate how individuals from diverse cultures and contexts experience meaningful occupation as described in qualitative research, applying meta-ethnographic approach. MATERIAL AND METHODS: The study was based on 44 qualitative articles, selected by following a systematic procedure. Articles published between 2003-2021 were included. Studies on children, intervention and review articles were excluded. All authors conducted the analysis and synthesis, in several steps, and reached a consensus interpretation of the data. RESULTS: Five categories explaining why and how people experienced meaning emerged. They were represented in all contextual settings. The main category was 1) Constructing identity and self-actualising throughout life. The other four categories were 2) Cultivating valued feelings 3) Spiritualising by being energised or disentangled 4) Connecting and belonging 5) Rhythmizing and stabilising by being occupied. CONCLUSION AND SIGNIFICANCE: The synthesis provided novel insights into how people experience meaning in occupation in various contexts as part of their process of constructing identity and self-actualisation throughout life. This knowledge is valuable as expanding and nuancing the understanding of meaningful occupation.

Experiences of the Redesigning Daily Occupation programme - a qualitative study among persons with neurological diseases.

BACKGROUND: The Redesigning Daily Occupations (ReDO) is a programme targeting persons who need to restructure activities and routines to achieve a healthier balance in everyday life. Issues that often is needed for persons with neurological diseases. AIMS/OBJECTIVES: To describe how persons with neurological disease experienced the ReDo-programme and to investigate how their occupational patterns and fatigue changed during the programme. MATERIAL AND METHODS: A mixed method study with a convergent parallel design including ten participants. Questionnaires and individual semi-structured interviews have been used and data analysed by descriptive statistics and thematic analysis. RESULTS: The findings indicated an increased participation in everyday life after the intervention. Furthermore, the main theme showed that the intervention enabled reflections and new insight. Sub-themes included: feeling pressured to perform, being part of a group and changing occupational pattern. CONCLUSIONS: Participants valued being a group; however, they experienced the intensity as being too high. The content of the intervention enabled reflections and new insights regarding their occupational pattern, which was experienced as a starting point towards behavioural changes and re-prioritisation of occupations in everyday life. SIGNIFICANCE: A modified version with lower intensity and careful goal setting might be valuable for persons with neurological diseases.

Social Interactions in Everyday Life of Socially Anxious Adolescents: Effects on Mental State, Anxiety, and Depression.

Unfavorable interpersonal behavior in social anxiety disorder (SAD) contributes to the maintenance of the disorder and may also be related to the development of secondary depression. Since there is limited research on daily life behavior in SAD, this study aimed to describe social interaction behavior and analyze the effect of positive interactions on depression, anxiety, and mental state. Data were obtained from the Behavior and Mind Health study (11/2015-12/2016), an epidemiological cohort study of adolescents and young adults (n = 1,180, aged 14-21 years) from Dresden, Germany. Interpersonal behavior, current mental state, anxiety, and depression were assessed eight times per day over four days using smartphone-based ecological momentary assessments. The analyzed subsample consisted of n = 723 participants, comparing 12-month SAD (n = 60) and healthy controls (HC; n = 663). The interaction behavior of participants with SAD did not differ substantially from that of HC in terms of frequency of social interactions, type of interaction partner, and time spent communicating, although they reported fewer real-life interaction partners (SAD: M = 2.49, SD = 4.78; HC: M = 3.18, SD = 6.43; F(17,044) = 23.92, p < 0.001). When comparing mental state, anxiety, and depression after interactions with familiar people to no interaction, no differences were found between SAD and HC. However, interactions with unfamiliar people negatively affected depressive symptoms in individuals with SAD (b = 0.53; SE = 0.25; 95%CI: 0.04-1.03; p = 0.036). In adolescents with SAD, social situations with unfamiliar people seem to be processed in a dysfunctional way, contributing to increased depressive mood in everyday life. This is particularly interesting given the high rate of secondary depression in SAD.

The experience of living with malignant meningioma.

OBJECTIVES: Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1-3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis. METHODS: This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke's guidelines. RESULTS: Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals. SIGNIFICANCE OF RESULTS: We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients' identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.

Experiences of improvement of everyday life following a rehabilitation programme for people with long-term cognitive effects of COVID-19: Qualitative study.

AIM AND OBJECTIVES: To explore challenges in everyday life for people with long-term cognitive effects of COVID-19 and whether a rehabilitation programme contributed to the remedy thereof. BACKGROUND: Healthcare systems around the world need knowledge about acute COVID-19 treatment, long-term effects exerting an impact on peoples' everyday lives, and how to remedy these. DESIGN: This is a qualitative study with a phenomenological approach. METHODS: Twelve people with long-term cognitive effects of COVID-19 participated in a multidisciplinary rehabilitation programme. Individual semi-structured interviews were made. Data were analysed thematically. RESULTS: Three themes and eight sub-themes emerged with respect to everyday life challenges and experiences of the rehabilitation programme. The themes were (1) Personal insight and knowledge, (2) Changed daily routines at home and (3) Coping with working life. CONCLUSION: Participants experienced long-term effects of COVID-19 as cognitive challenges, fatigue and headaches, which affected their everyday lives, that is inability to overcome daily tasks at home and at work, maintaining family roles and relations with relatives. The rehabilitation programme contributed to a vocabulary and insights related to the long-term effects of COVID-19 and the experience of being a different person. The programme contributed to changes in daily routines, organising breaks in everyday life and explaining challenges to family/relatives and the way in which they affected daily routines and their role in the family. In addition, the programme supported several of the participants in finding the right workload and working hours. RELEVANCE TO CLINICAL PRACTICE: We recommend multidisciplinary rehabilitation programmes inspired by cognitive remediation of long-term COVID-19 cognitive effects. Municipalities and organisations could collaborate in the development and completion of such programmes, possibly comprising both virtual and physical elements. This could facilitate access and reduce costs. PATIENT OR PUBLIC CONTRIBUTION: Patients contributed to the conduct of the study by participating in the data collection via interviews. CLINICAL TRIAL REGISTRATION NUMBER: Data collection and processing of data are approved by the Region of Southern Denmark (journal number: 20/46585).

Evaluating functional abilities within the context of memory assessment: A practice survey of neuropsychologists.

Objective: Functioning in daily life is an important consideration when differentiating between individuals with normal cognition, mild neurocognitive disorder, and major neurocognitive disorder. Despite this, there is no gold standard measurement approach for assessing functional abilities and few guidelines on how to do so. The objective of this study was to examine neuropsychologists' practices regarding the assessment of functional abilities across the spectrum of memory ability. Method: A total of 278 psychologists who routinely conduct neuropsychological assessments completed an online survey (estimated 15% response rate) querying their practices and perspectives with respect to the assessment of functional abilities. Results: Respondents identified that changes to several components of daily functioning, including activities of daily living, were important when evaluating functional abilities. Respondents reported utilizing a variety of instruments to assess functioning, with an overwhelming majority indicating the use of semi-structured interviews. Although most respondents are satisfied with existing tools, a quarter of respondents felt strongly that there was a need for more instruments of everyday functioning. Respondents further indicated that their recommendations to patients, particularly regarding compensatory strategies and follow-up with other professionals, were informed by results of their functional assessment. Conclusions: Overall, our survey results indicate that neuropsychologists perceive multiple factors of daily life to be important considerations when evaluating functioning, use a variety of techniques to assess functioning, and perceive a need for more measures of functional abilities.