BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.
Pour aborder les diverses formes que peut prendre la mort dans les jeux vidéo comme un phénomène unitaire que, faute de disposer comme en allemand du neutre (das Tode, « ce qui est mort ») ou de pouvoir inventer un terme spécifique, nous nommerons simplement : la mort, nous retenons trois lignes de force qui sont autant de pistes de lecture. Nous les donnons ci-après en ordre croissant d’importance. Il faut, disons-nous, préciser le rôle des jeux vidéo en tant que spectacles mettant en scène ce phénomène. Leur existence est certes encore trop récente et leur évolution trop rapide pour qu’il soit possible d’établir à leur sujet un bilan définitif. Tout ce qui va suivre n’a donc qu’un caractère provisoire, voire hypothétique.
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Background: Self-rated health (SRH) and the surprise question (SQ) capture perceptions of health and are independent risk factors for poor outcomes. Little is known about their association with physiologic and functional decline.
Objective: Determine the association of SRH and SQ with frailty and functional status in older adults with chronic kidney disease (CKD) and their utility as screening tools.
Design: Prospective cohort study.
Setting/Subjects: Two hundred seventy-two adults, age =60 years, with advanced CKD seen in nephrology clinic.
Measurements: Patients completed SRH and were evaluated for frailty (Fried criteria and Clinical Frailty Scale [CFS]) and functional status (Katz and Lawton indices of activities of daily living [ADLs] and instrumental ADLs [iADLs]). Providers completed the SQ. Correlations were evaluated using Spearman's rho.
Results: Fifteen percent of patients were frail, 8% had =1 ADL deficit, and 29% had =1 iADL deficit. SRH and SQ were moderately correlated with frailty and iADLs. A SRH of excellent, very good, or good was predictive of nonfrail status (Fried negative predictive value [NPV]: 0.92; CFS NPV: 0.92) and preserved ADL function (NPV for =1 deficit: 0.96). A SQ response of 5, 4, or 3 (i.e., surprised) was predictive of nonfrail status and preserved ADL function (CFS NPV: 0.90; ADL =1 deficit NPV: 0.95). A SQ response of 1 or 2 had a positive predictive value of 0.64 for =1 iADL deficit.
Conclusions: Subjective health measures may be useful screening tools for frailty and functional status.
Cognitive decline and dementia have become major concerns for many individuals reaching later life within contemporary Western societies. This fear of decline is central to the social divide between the third age embodying ideals of maintained health, activity and lifestyle choices, and the fourth age, a social imaginary encompassing the irreversible decline associated with ageing. In this article, we explore how brain-training technologies have become successful by relying on tensions between the third and fourth ages. We review current debates on the concepts contained in brain training and examine the emphasis on the moral virtue of ‘training the brain’ in later life as an extension of fitness and health management. We underline the limited consideration given to social positioning within old age itself in the literature. We further argue that using brain-training devices can support a distancing from intimations of dementia; a condition associated with an ‘ageing without agency’. Drawing on Bourdieu, we use the concept of distinction to describe this process of social positioning. We discuss the impact that such ‘technologies of distinction’ can have on people with dementia by ‘othering’ them. We conclude that the issue of distinction within later life, particularly within the field of cognitive decline, is an important aspect of the current culture of active cognitive ageing.
Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.
This study explored end-of-life (EOL) activities among community-dwelling Japanese older adults and the relationships between EOL activities and related variables. One hundred twenty-three older adults (38 men, 87 women; mean age = 72.54 years) who attended EOL seminars were surveyed regarding EOL activities, attitudes toward death, and mental health status. Cluster analysis of EOL activities revealed three clusters: Planning (e.g., had planned own funeral arrangements), Preference (e.g., had talked about EOL care with their family), and Preparation (e.g., already written their will). The number of EOL-related events attended was positively correlated with Preparation, while fear of death was negatively associated with Preference. Older adults with bereavement experience had higher Planning and Preparation scores than those without such experience.
Background: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the ‘Cancer Home-Life Intervention’.
Aim: To evaluate the efficacy of the ‘Cancer Home Life-Intervention’ compared with usual care with regard to patients’ performance of, and participation in, everyday activities, and their health-related quality of life.
Design and intervention: A randomised controlled trial (ClinicalTrials.gov NCT02356627). The ‘Cancer Home-Life Intervention’ is a brief, tailored, occupational therapy–based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities.
Setting/participants: Home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability. Secondary outcomes were activities of daily living process ability, difficulty performing prioritised everyday activities, participation restrictions and health-related quality of life.
Results: A total of 242 participants were randomised either to the intervention group (n = 121) or the control group (n = 121). No effect was found on the primary outcome (between-group mean change: -0.04 logits (95% confidence interval: -0.23 to 0.15); p = 0.69). Nor was any effect on the secondary outcomes observed.
Conclusion: In most cases, the ‘Cancer Home-Life Intervention’ was delivered through only one home visit and one follow-up telephone contact, which not was effective in maintaining or improving participants’ everyday activities and health-related quality of life. Future research should pay even more attention to intervention development and feasibility testing.
BACKGROUND: Persons with advanced dementia cannot initiate activities because of the executive dysfunction. The lack of activities was identified as one of the most important factors contributing to behavioral problems of these persons. The unmet needs were boredom/sensory deprivation, loneliness/need for social interaction, and need for meaningful activities. There is a need for activities designed specifically for residents with advanced dementia.
OBJECTIVE: A description of patient's needs and of programs that intend to maintain quality of life for people with dementia and facing death.
DATA SOURCES: A literature review of programs used for persons with advanced dementia and residing in long-term facilities, using the PubMed data base and collateral sources.
RESULTS: Since palliative care is appropriate for persons with advanced dementia, attention has to be paid to three following important aspects of care: Medical issues, behavioral symptoms, and meaningful activities. Medical interventions should be limited to those which have more benefits than burdens, behavioral symptoms should be distinguished according to the context in which they occur, and treated by non-pharmacological interventions that involve meaningful activities. This review describes four programs that may promote the quality of life in persons with advanced dementia and facing death. They are designed for persons with advanced dementia, taking into account their functional impairments. Most of these programs involve short infrequent sessions. In contrast, Namaste Care is a daily extended program of enhanced nursing care that can provide quality of life until the last breath.
CONCLUSIONS: It is possible to maintain quality life for people with advanced dementia if a special program of activities is available.
This study aimed to develop a conceptual framework of the experience of persons who have lost a family member to suicide in Japan. The authors conducted in-depth interviews with 24 such family members. They conceptualized their experience as a process of regaining my new life. Initially, their lives were out of their hands, but gradually they learned striving skills and recuperative conditioning, and integrated the skills to regain their lives. Some participants eventually reached a state of living a redefined life. How individuals underwent this process varied. The authors identified two types of people dealing with this issue: dialoguers and mood changers.
BACKGROUND: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the 'Cancer Home-Life Intervention'.
AIM: To evaluate the efficacy of the 'Cancer Home Life-Intervention' compared with usual care with regard to patients' performance of, and participation in, everyday activities, and their health-related quality of life.
DESIGN AND INTERVENTION: A randomised controlled trial (ClinicalTrials.gov NCT02356627). The 'Cancer Home-Life Intervention' is a brief, tailored, occupational therapy-based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities.
SETTING/PARTICIPANTS: Home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability. Secondary outcomes were activities of daily living process ability, difficulty performing prioritised everyday activities, participation restrictions and health-related quality of life.
RESULTS: A total of 242 participants were randomised either to the intervention group ( n = 121) or the control group ( n = 121). No effect was found on the primary outcome (between-group mean change: -0.04 logits (95% confidence interval: -0.23 to 0.15); p = 0.69). Nor was any effect on the secondary outcomes observed.
CONCLUSION: In most cases, the 'Cancer Home-Life Intervention' was delivered through only one home visit and one follow-up telephone contact, which not was effective in maintaining or improving participants' everyday activities and health-related quality of life. Future research should pay even more attention to intervention development and feasibility testing.
Un modèle d’accompagnement des souffrances pédiatriques, fondé sur une activité culinaire guidée par une infirmière, a été expérimenté en Afrique. L’approche soignante permet d’affermir les liens psychoaffectifs entre l’enfant et son proche privilégié, et d’apaiser les angoisses autour de la dyade mère/enfant. Une situation clinique de fin de vie autour d’un enfant pris en charge dans une structure hospitalière au Cameroun illustre cette démarche.
Maintaining physical independence is important to terminally ill patients; rehabilitation can improve both functional status and quality of life (QOL) during palliative care. In this prospective pilot study, we evaluated changes in physical function, symptoms, and QOL among 19 hospitalized patients receiving palliative or terminal care for cancer (7 men and 12 women; mean age, 66.8 years, range, 44–84 years). Assessments were performed at admission and after 2 weeks, primarily using the Functional Independence Measure (FIM) and the McGill Quality of Life Questionnaire (MQOL), and a follow-up evaluation was performed 4 weeks after admission if possible. The study was from April to September 2013. In 19 patients, FIM responses were obtained from 17 and 7 patients at 2 and 4 weeks, respectively. MQOL responses were obtained from 11 and 5 patients at 2 and 4 weeks, respectively. A comparison of FIM scores at admission and 2 weeks revealed nonsignificant reductions in the total, motor, and cognitive elements (P = 0.46, 0.70, and 0.20, respectively), which remained nonsignificant at 4 weeks (P = 0.51, 0.65, and 0.27, respectively). There was no significant decline in the total MQOL between admission and 2 and 4 weeks. Although QOL was correlated with physical symptoms, it was not correlated with function. In conclusion, we showed that patient function did not significantly decline and that self-efficacy was maintained with our intervention. A multidisciplinary palliative care approach may reduce symptoms, thereby improving patient QOL. Achieving symptom control is still the mainstay of palliative care.
Vital events, such as widowhood and retirement, are broadly accepted as points of inflection in the lives of older adults that often differ according to gender. In this study, we analyzed the influence of gender on meaningful leisure among older adults through the integration of qualitative and quantitative findings. The use of joint displays revealed that in this sample of people from Northern Spain: (1) there were no significant differences in the influence of retirement and widowhood on the leisure of the two genders, (2) the ethic of care was a constraining factor in older women's leisure, (3) women were more innovative in their leisure in older age, and (4) volunteer activities were highly segregated by gender. The use of joint displays helped illuminate these four phenomena in light of quantitative and qualitative data.
Background: The primary aim when providing advice to patients on fitness to drive is the safety of the patient and the general public. Within the current Australian guidelines there is little specific information in regards to providing advice to palliative care patients about driving.
Method: Online survey.
Objective: To investigate the current practice of doctors and the advice provided to palliative care patients about their fitness to drive.
Discussion: When advising a patient with a medical condition that could affect fitness to drive, most respondents were not in consensus with the driving guidelines with only 38% following the recommended procedure. It found some disparity in the advice provided and differences to the Australian driving guidelines.
BACKGROUND: Today people can live a long time with a chronic cancer diagnosis, and it affects the entire family. Family members to patients in palliative care often have to leave valued occupations due to lack of time and energy, while new roles are forced upon them, potentially affecting their health.
OBJECTIVE: To explore occupational balance, needs and roles among family members to persons in palliative care.
METHODS: Six semi-structured interviews were conducted with family members to terminally ill persons enrolled to specialized palliative care. A qualitative content analysis guided the data collection and analysis.
RESULT: An overarching theme Striving for control while being in the disease, and two categories Changing roles and occupations in the family; and Handling emotions in the end of life emerged from the data.
CONCLUSION: The findings suggest that family members could benefit from strategies to maintain valued roles and occupations, and that palliative care provision need to develop new ways to take family members needs into consideration.
Objectives: Given the necessity for proxy ratings at end of life, we developed the integrated assessment tool for daily activity and symptoms (IDAS) to evaluate patients with advanced cancer. This study aimed to define IDAS and to test its clinical utility by applying it for a large number of patients.
Methods: IDAS is defined as sum of positive aspects (e.g. eating) and negative aspects (e.g. pain) of patient’s life. IDAS is scored daily by nurses and is sequentially plotted in a graph that shows a longitudinal change of patient’s condition throughout hospitalization. We applied IDAS for 1924 patients in palliative care unit, categorizing them into short (<7 days), medium (7–31 days) and long (>32 days) term groups according to the length of hospitalization, and 4 subgroups according to IDAS subtypes defined by the average IDAS and positive/negative IDAS scores (type I: Well-controlled, type II: Fairly controlled, type III: Unstable, type IV: Impaired). IDAS scores were compared among short, medium and long-term groups by using analysis of variance (ANOVA). Length of hospitalization was compared among four subgroups according to IDAS subtypes by using ANOVA. The simple and multiple linear regression analysis was used to determine the association between average IDAS scores and length of hospitalization.
Results: Average IDAS and positive IDAS scores were the highest in long-term group (3.7 and 3.8), followed by medium-term (2.3 and 2.5) and short-term groups (0.6 and 0.9), whereas negative IDAS scores were highest in long-term group (-0.1), followed by medium-term (-0.2) and short-term (-0.3). Length of hospitalization was significantly different, with the mean for type I (50.1 days), type II (23.7), type III (23.0), and type IV (10.1). The correlation analysis showed a positive correlation between average IDAS scores and length of hospitalization.
Conclusions: Our results suggest that IDAS is a clinically feasible tool to daily evaluate both positive and negative aspects of patient’s condition throughout hospitalization. Higher average IDAS score was associated with a longer hospital stay, suggesting that certain time may be necessary to optimize palliative care treatment and control symptoms while disease severity upon admission may affect the duration of hospitalization.
OBJECTIVES: Maintaining cognitive function is an essential aspect of successful aging. Widowhood is a salient life transition that can affect older adults' cognitive function. Leisure engagement has received increasing attention because it is still modifiable in later life to help prevent cognitive decline. Nonetheless, limited longitudinal studies have examined how widowhood influences cognitive function, and even fewer studies have tested the role of leisure activities in this relationship.
METHOD: This study delineated the mechanism of widowhood, leisure activity engagement, and cognitive function among older adults using a national longitudinal dataset, the Health and Retirement Study, and its supplementary dataset, the Consumption and Activities Mail Survey, which repeatedly measured individuals' leisure activity engagement.
RESULTS: Findings showed no significant association between widowhood and cognitive function during a 4-year period. However, engagement in mental activities moderated the impact of widowhood on cognitive function. Specifically, the benefit of mental activity engagement on cognition was more pronounced among individuals who were recently widowed compared to those who were married. This implies a protective role of mental activities in the relationship between widowhood and cognitive function.
CONCLUSION: Interventions with mentally stimulating activities at the community level to retain cognition among individuals in early phase widowhoodare suggested. Future studies are necessary to explore whether other factors such as changes in physical and mental health and intergenerational support from adult children during widowhood may further influence this mechanism among widowhood, leisure activities, and cognitive function.
Le jeu vidéo indépendant Unmanned (2012) de Jim Munroe raconte la crise de l’éthos guerrier causée par l’arrivée des drones comme stratégie privilégiée par l’armée américaine. Le personnage, contrôlé par le joueur, évolue dans un monde où il lui faut sans cesse agir de manière contradictoire. Pour cette raison, il doit tenter de réconcilier sa vie personnelle et sa vie professionnelle. Unmanned montre les troubles causés par cette nouvelle manière de tuer les ennemis. Le mort échappe désormais au domaine de la représentation. L’étude de cette oeuvre vidéoludique permet aussi de voir comment l’espace créatif du jeu indépendant permet de construire un commentaire critique sur l’industrie du jeu vidéo.
Cette étude analyse trois représentations de la mort dans les jeux de combat, de tir, de science-fiction, de courses automobiles, d’horreur ou de guerre. La première, qui retient le plus l’attention parce qu’elle est l’événement majeur de l’intrigue, est celle de la mort stricto sensu (partie 1). Avec sa cruauté, sa fréquence, l’énergie qu’elle mobilise chez le joueur, le bénéfice qu’elle lui apporte et les risques qu’elle lui fait courir, cette première mort est la « mort-reine » des jeux. La partie 2 traite du redoutable personnage de la mort, tantôt asexué (squelette armé d’une faux), tantôt sexué (femme vêtue de noir, guerrier). La partie 3 aborde la représentation des morts : simples revenants, morts-vivants, zombies ou autres créatures monstrueuses. L’étude montre que les jeux vidéo constituent un bon exemple du recyclage contemporain de certaines traditions mythologiques et eschatologiques de la civilisation occidentale.
Les rituels religieux ou de célébrations collectives se sont développés ces dernières années sur internet. Si ce type de pratiques a fait l’objet de plusieurs études, la motivation des protagonistes et la nature fondamentale de ces cérémonies a peu fait l’objet d’analyse. À partir de l’ethnographie d’une cérémonie d’hommage à un défunt dans le jeu vidéo World of Warcraft, le présent article se focalise sur l’intention des participants. Sur la base de différents témoignages, nous entendons démêler la nature foncièrement religieuse et/ou sociale de ces commémorations.