Context: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning.
Objective: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD.
Methods: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged =65 years with advanced disease in the UK, Ireland, and USA. Cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6-months) data. Measures: disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; Visual Graphical Analysis explores individual disability trajectories.
Results: 159 participants were included (140 cancer, 19 COPD). 65% had difficulty climbing stairs, 48% bathing, 39% dressing, 36% mobilising. Increased disability was independently associated with increased symptom burden (odds ratio [OR], 1.08 [95% CI:1.02-1.15], p=0.01) and walking unaided (z=2.35, p=0.02), but not with primary diagnosis (z=-0.47, p=0.64). Disability generally increased over time but with wide inter-individual variation.
Conclusion: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.
BACKGROUND: Although rehabilitation is recommended for terminal cancer patients, the specific components and methods of such programs are poorly documented. No studies to date have examined the effectiveness of rehabilitation for terminal cancer patients. This study aims to evaluate the efficacy of a new intervention for rehabilitation therapists, using the Op-reha Guide (Guide to Optimal and Patient-Centred Rehabilitation Practice for Patients in Palliative Care Units [PCUs]) in rehabilitation practice. This guide consists of recommended actions and attitudes for rehabilitation therapists and aims to optimise therapists' actions according to the patient's needs and condition. It shares goals with terminal cancer patients to maintain their activities of daily living (ADL).
METHODS: This study uses a multicentre, prospective, randomised controlled trial (RCT) design with two parallel groups in PCUs where specialised rehabilitation will be routinely performed for terminal cancer patients by rehabilitation therapists. Participants will be randomised (1:1) to intervention (the Op-reha Guide) and control groups (usual rehabilitation). We will then conduct an observational study in PCUs that do not perform specialised rehabilitation for terminal cancer patients; this will be considered the usual care group, and the efficacy of usual rehabilitation will be quantitatively evaluated. Inclusion criteria are hospitalisation in PCU, European Cooperative Oncology Group Performance Status of 2 or 3, and clinical estimation of life expectancy of 3 }weeks or more. Patients with severe symptom burden will be excluded. We hypothesise that the Op-reha Guide will be more effective in maintaining the ADL of terminal cancer patients hospitalised in PCUs than usual rehabilitation. The primary endpoint is defined as the change in (total) modified Barthel Index from baseline to Day 22. Quality of life will be a secondary endpoint. In total, 135 patients will be recruited from 16 Japanese sites between July 2019 and December 2021.
DISCUSSION: This will be the first trial to evaluate the efficacy of specialised rehabilitation for terminal cancer patients hospitalised in PCUs, and will contribute to the evidence on the efficacy of implementing rehabilitation for terminal cancer patients.
Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.
Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants’ perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.
Background: Chronic breathlessness is a disabling syndrome that profoundly impacts patients’ and caregivers’ lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving.
Aim: To understand patients’ and caregivers’ (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving.
Design: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (<=32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted.
Setting/participants: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9).
Results: Participants were interviewed at home. Eleven received morphine 8–32 mg. Three themes emerged: (1) independence; (2) breathlessness’ impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine.
Conclusion: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.
Dans un EHPAD, Alexandrine, 85 ans, Gisèle, 80 ans et Marie-Thérèse, 100 ans, veulent se venger des hommes qui les ont maltraitées. Dès lors, les histoires du passé et les projets de meurtre s'invitent dans leur quotidien, que ce soit dans les parties de Scrabble, les promenades dans le parc ou les séances de kiné. Marie Laborde décrit les aléas du grand âge à travers ses héroïnes autour desquelles gravitent personnel médical et vieux Casanova lubriques.
AIMS AND OBJECTIVES: This study explores everyday life experience of relatives of people with ALS living at home with mechanical ventilation and formal caregivers.
BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival.
DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used.
RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers - a distressing relief, A prison without personal space, and We are in this together until the end.
CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end.
RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.
La créativité, c'est cette capacité à percevoir ce qui est là, tapi entre les mots, sous les gestes, dans les interstices du quotidien. C'est la vie qui palpite derrière les apparences, ce sont ces désirs enfouis qui témoignent de la vie. La créativité, c'est permettre à toute cette vitalité de se dire et de se réaliser. Et c'est comme une invitation à sortir des cabines téléphoniques trop étroites dans lesquelles nous nous enfermons, souvent en toute inconscience.
Background: Cachexia is a complex and multifactorial syndrome defined as severe weight loss and muscle wasting which frequently goes unrecognised in clinical practice. It is a debilitating syndrome, resulting in patients experiencing decreased quality of life and an increased risk of premature death; with cancer cachexia alone resulting in 2 million deaths per annum. Most work in this field has focused on cancer cachexia, with cardiac cachexia being relatively understudied – despite its potential prevalence and impact in patients who have advanced heart failure. We report here the protocol for an exploratory study which will: 1. focus on determining the prevalence and clinical implications of cardiac cachexia within advanced heart failure patients; and 2. explore the experience of cachexia from patients’ and caregivers’ perspectives.
Methods: A mixed methods cross-sectional study. Phase 1: A purposive sample of 362 patients with moderate to severe heart failure from two Trusts within the United Kingdom will be assessed for known characteristics of cachexia (loss of weight, loss of muscle, muscle mass/strength, anorexia, fatigue and selected biomarkers), through basic measurements (i.e. mid-upper arm circumference) and use of three validated questionnaires; focusing on fatigue, quality of life and appetite. Phase 2: Qualitative semi-structured interviews with patients (n = 12) that meet criteria for cachexia, and their caregivers (n = 12), will explore their experience of this syndrome and its impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative thematic and content analysis. Phase 3: Workshops with key stakeholders (patients, caregivers, healthcare professionals and policy makers) will be used to discuss study findings and identify practice implications to be tested in further research.
Discussion: Data collected as part of this study will allow the prevalence of cardiac cachexia in a group of patients with moderate to severe heart failure to be determined. It will also provide a unique insight into the implications and personal experience of cardiac cachexia for both patients and carers. It is hoped that robust quantitative data and rich qualitative perspectives will promote crucial clinical discussions on implications for practice, including targeted interventions to improve patients’ quality of life where appropriate.
Increased mortality after spousal bereavement has been observed in many populations. Few studies have investigated the widowhood effect in a traditional culture where the economy is underdeveloped. The reasons for the widowhood effect and its gender dynamic are not well understood. In this study, we assessed whether the widowhood-associated excess mortality exists and differs by gender and living arrangement in rural China. We used a six-wave panel of data derived from rural people over 60 years old in the Chaohu region of China. Cox regression analyses suggest that there was a positive effect of spousal loss on mortality for older rural Chinese and this effect was gender different. Our findings also suggest that living with adult children after spousal loss played a protective role in reducing the risk of older men's death, though it tended to increase older men's mortality risk in general.
OBJECTIVES: To compare rates of restricted activity and associated symptoms and problems in the last 6 months of life with those in the period before the last 6 months of life.
DESIGN: Prospective cohort study.
SETTING: Greater New Haven, Connecticut.
PARTICIPANTS: Community-living persons aged 70 and older (N=754).
MEASUREMENTS: The occurrence of restricted activity (staying in bed for at least half the day or cutting down on usual activities) and 24 prespecified symptoms and problems leading to restricted activity was ascertained monthly for nearly 19 years.
RESULTS: Rates of restricted activity per 100 person-months were 36.5 in the last 6 months of life versus 16.1 in the period before the last 6 months of life (P<.001). Of 737 participants with 1 month or more of restricted activity, rates of restricting symptoms per 100 person-months of restricted activity ranged from 8.0 for frequent or painful urination to 65.6 for been fatigued, and rates of restricting problems ranged from 0.1 for problem with alcohol to 23.4 for been afraid of falling. Rates were significantly higher in the last 6 months of life than in the prior period for 13 of the 24 restricting symptoms and problems (P<.05), most notably for shortness of breath (38.6 vs 21.8), weakness (37.3 vs 18.9), and confusion (31.2 vs 9.8). Mean (standard error) number of restricting symptoms and problems was significantly higher in the last 6 months of life (6.1 (0.1)) than in the prior period (4.7 (0.03)) (P<.001).
CONCLUSION: Rates of restricted activity and associated symptoms and problems are substantially greater in the last 6 months of life than in the period before the last 6 months of life. Enhanced palliative care strategies may be needed to diminish the burden of distressing symptoms and problems at the end of life.
A Londres, trois jeunes gens, Ted, Danny et Charlotte, tentent de donner un sens à leur quotidien marqué par la morosité, la solitude et des conditions de vie précaires. Eprouvés par la mort de leur ami Tony, survenue dix ans plus tôt, ils sombrent dans le déni. Le soir de l'anniversaire du décès, ils se retrouvent pour faire le bilan et se donner un nouvel élan.
Depuis 2013, Francis Valla est atteint de la maladie de Charcot entraînant une paralysie inévitable. Il raconte son combat au quotidien, ses doutes et ses joies, soutenu par sa foi et son amour de la vie.
Entre le monde d'avant - celui qui précède la mort de son épouse - et le monde d'après aux contours proches, mais plus que jamais flous, il y a le présent, le quotidien incontournable, qui se nourrit de souvenirs, de nostalgie... et de questionnements sur le sens de l'époque et sur notre devenir. La souche, c'est un récit d'amour clinique et mélancolique, et d'espoir aussi. C'est le vagabondage d'un vieil homme qui tourne autour de sa "souche".
Atteint d'un cancer du poumon, le documentariste Christophe Otzenberger fait face à la maladie en filmant ceux qui, comme lui, tentent d'apprivoiser la mort.
Dans l'hôpital du littoral breton où il est traité, des femmes et des hommes de tous âges, eux aussi concernés par une maladie chronique ou une échéance qu'ils savent proche, se débrouillent comme ils peuvent avec la vie qui se dérobe. Leur dialogue et leurs arrangements incessants avec ces jours qui restent est une preuve éclatante de la flamme qui les anime, jusqu'au bout.
Avec l'aide de sa complice Stéphane Mercurio, qui l'a filmé tout au long de son tournage, Christophe Otzenberger (La conquête de Clichy) dialogue avec ses semblables et documente le quotidien des sursitaires, entre petits arrangements et questions insolubles. À la fois aperçu d'un film en pleine création et bel hommage à la ténacité des malades, son travail fait éclore la poésie, la douceur et – plus souvent qu'on ne pourrait le croire – la drôlerie qui circule dans les couloirs des hôpitaux. Christophe Otzenberger est mort en juin 2017, avant d'avoir pu débuter le montage de ce beau dernier documentaire, terminé par Stéphane Mercurio.
[Extrait résumé du film]
"Tumeur changeante" est le récit d'un accompagnant qui relate le combat mené par Sylvie, une jeune mère de famille de 38 ans atteinte d'une tumeur au cerveau. Une maladie qui va bouleverser son quotidien et celui de sa petite famille entraînée avec elle dans la spirale de l'isolement. Une solitude qui va remettre en cause les rapports qu'elle entretenait jusqu'alors avec la Médecine, la Religion et la Société. Une société où l'indifférence des uns est compensée par l'empathie des autres.
This study aimed to understand, through the bias of everyday life, the phenomenon of maternal mourning. It is a qualitative pilot study on three bereaved mothers. Semi-structured interviews were used for data collection and content analysis was performed using typical categories of daily life. It was possible to observe significant changes in the mothers’ daily lives after their children’s deaths; however, they created strategies that minimized such impacts. Losing a child leads to reconstructing one’s own history and identity. It is believed that daily life is an important bias, and thus its study could help us understand this phenomenon.