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.
BACKGROUND: Breakthrough cancer pain (BTcP) is a predictor of interference with general activities and poor pain management. The extent of this influence has not yet been determined.
OBJECTIVE: This study aimed to investigate the influence of BTcP on general activities, and pain management in patients with controlled background pain.
DESIGN: Single-center prospective observational study.
SETTING/SUBJECTS: The study cohort comprised 258 consecutive patients (female, 40.0%; mean age, 64.5 years) who had received opioid medication for cancer pain for over 2 weeks.
MEASUREMENTS: A recommended diagnostic algorithm was used to quantitate and compare interference with general activities, average background pain intensity over the previous 24 hours (24h-PI), and achievement of personalized pain goals (PPGs) (24h-PI=PPG) of 119 patients with and 139 patients without BTcP.
RESULTS: Interference with general activities, 24h-PI, and PPG scores [mean (standard deviation)] in patients with BTcP were 2.8 (2.2), 3.0 (1.7), and 1.8 (1.4), respectively, which are all significantly higher than for those without BTcP [1.3 (2.0), p < 0.01; 1.7 (1.6), p < 0.01; 1.5 (1.3), p = 0.03], respectively. A significantly smaller percentage of patients with BTcP than without BTcP achieved their PPGs (36.1% vs. 67.6%, p < 0.01).
CONCLUSIONS: BTcP has a negative impact on general activities and pain management. Healthcare providers should recognize that management of BTcP is important in improving general activities and management of cancer pain.
INTRODUCTION: Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for 'healthy life and wellbeing for all at all ages', though there is a limited understanding of wellbeing particularly from patients' and families' perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is 'largely ignored' on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi.
METHODS: Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held.
RESULTS: Wellbeing was described as seeing improvements in the patients' function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as 'courage givers' supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered 'prematurely dead' in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination.
CONCLUSIONS: To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.
BACKGROUND: Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems.
OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews.
SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.
MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis.
RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy.
CONCLUSIONS: Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member.