Dignity and loss of dignity: Experiences of older women living with incurable cancer at home

Background: The focus of specialized palliative care is to improve quality of life for patients with incurable cancer and their relatives including an increased opportunity to make their own choice of place of care and death. Aim: To investigate whether a systematic fast-track transition from oncological treatment to specialized palliative care at home for patients with incurable cancer reinforced with a psychological dyadic intervention could result in more time spent at home and death at home. Secondary aims were to investigate effects on quality of life, symptomatology and survival. Design: A prospective, single-centre, randomized controlled trial ( Clinicaltrials.gov : NCT01885637). Setting/participants: In all, 340 patients with incurable cancer and no or limited antineoplastic treatment options. Results: No statistically significant difference was found regarding number of deaths (4%, p = 0.460) and time spent at home (3%, p = 0.491). The secondary outcomes indicated that the intervention resulted in improved quality of life (−11.6 ± 25.5, p = 0.005, effect size = −0.44, 95% confidence interval = −0.77; −0.11), social functioning (−15.8 ± 31.4, p = 0.001, effect size = −0.50, 95% confidence interval = −0.84; −0.17) and emotional functioning (−9.1 ± 21.2, p = 0.039, effect size = −0.43, 95% confidence interval = −0.76; −0.10) after 6 months. A linear mixed-effect regression model confirmed a possible effect on emotional and social functioning at 6 months. Regarding survival, no differences were found between groups ( p = 0.605). No adverse effects were seen as consequence of the intervention. Conclusions: The main findings indicated that the intervention had no effect on time spent at home or place of death. However, the intervention resulted in a weak improvement of quality of life, social functioning and emotional functioning after 6 months.

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Dyadic psychological intervention for patients with cancer and caregivers in home-based specialized palliative care: The Domus model

Palliative & Supportive Care ◽

10.1017/s1478951517000141 ◽

2017 ◽

Vol 16 (2) ◽

pp. 189-197 ◽

Cited By ~ 9

Author(s):

Annika B. von Heymann-Horan ◽

Louise B. Puggaard ◽

Kathrine G. Nissen ◽

Kirstine Skov Benthien ◽

Pernille Bidstrup ◽

...

Keyword(s):

Palliative Care ◽

Psychological Intervention ◽

Interdisciplinary Collaboration ◽

Controlled Trial ◽

Psychological Support ◽

Psychosocial Needs ◽

Incurable Cancer ◽

Home Based ◽

Specialized Palliative Care ◽

At Home

ABSTRACTObjective:Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility.Method:The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions.Results:Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members.Significance of Results:Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC.

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Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: the DOMUS trial

BMC Palliative Care ◽

10.1186/s12904-020-00645-7 ◽

2020 ◽

Vol 19 (1) ◽

Author(s):

Christine Marie Bækø Halling ◽

Rasmus Trap Wolf ◽

Per Sjøgren ◽

Hans Von Der Maase ◽

Helle Timm ◽

...

Keyword(s):

Cost Effectiveness ◽

Usual Care ◽

Fast Track ◽

Psychological Intervention ◽

Intervention Group ◽

Control Group ◽

Incurable Cancer ◽

Oncological Treatment ◽

Link Type ◽

At Home

Abstract Background While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. Methods A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial (Clinicaltrials.gov: NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. Results In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. Conclusion This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. Trial registration The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637.

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Defecography in symptomatic older women living at home

Age and Ageing ◽

10.1093/ageing/32.3.347 ◽

2003 ◽

Vol 32 (3) ◽

pp. 347-350 ◽

Cited By ~ 25

Author(s):

C. Savoye-Collet

Keyword(s):

Older Women ◽

At Home

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OLDER WOMEN CARING FOR SPOUSES WITH ALZHEIMER’S DISEASE AT HOME: MAKING SENSE OF THE SITUATION

Health Care For Women International ◽

10.1080/07399330390183615 ◽

2003 ◽

Vol 24 (4) ◽

pp. 292-312 ◽

Cited By ~ 3

Author(s):

Olimpia Paun

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Older Women ◽

Making Sense ◽

At Home

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Cultural Care of Pregnancy and Home Birth: An Application of the Sunrise Model

Research and Theory for Nursing Practice ◽

10.1891/rtnp-d-19-00090 ◽

2020 ◽

Vol 34 (4) ◽

pp. 358-370

Author(s):

Elena Andina-Díaz ◽

José Siles-González

Keyword(s):

Pregnant Woman ◽

Older Women ◽

Nursing Practice ◽

Home Birth ◽

Well Being ◽

Psychosocial Aspects ◽

Structured Interviews ◽

Pregnancy And Childbirth ◽

At Home

Background and PurposeThe role of older women close to the pregnant woman may be relevant when conveying information. The use of theories/models can guide the development of nursing practice. Purpose: To explore beliefs and practices related to pregnancy and childbirth from the perspective of older women who gave birth at home, applying Leininger's Sunrise Model.MethodsQualitative approach, using semi-structured interviews with 24 older women who gave birth at home (rural area, Spain). Manual content analysis of the data was used, and Sunrise Model guided to explore the role of culture and the factors affecting maternity care.ResultsTwo main categories emerged: beliefs/practices related to physiological aspects (subcategories: minimal intervention, hygiene, pain control, rest, feeding) and to psychosocial aspects (subcategories: spiritual well-being, company).Implications for PracticeThe experiences of older women who gave birth at home helped us to understand some beliefs that survive in some pregnant women, similar in different cultures, and divided into physiological and psychosocial aspects. Older women have a relevant role as transmitters of information, and can provide some keys to plan health interventions, as companions or counselors. Applying the Sunrise Model, we verified the weight that culture has in maternal health care, and the multiple factors that interfere with the way of caring. The application of models helps us to improve nursing practice: not only should we focus on knowing the physical aspects, but also the social and cultural circumstances surrounding the pregnant woman.

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La souffrance en lien avec les écueils de la communication chez les femmes âgées atteintes de cancer incurable

Canadian Journal on Aging / La Revue canadienne du vieillissement ◽

10.1017/s071498081000053x ◽

2010 ◽

Vol 29 (4) ◽

pp. 529-541 ◽

Cited By ~ 2

Author(s):

Valérie Bourgeois-Guérin

Keyword(s):

Qualitative Research ◽

Older Women ◽

Phenomenological Analysis ◽

Humanistic Psychology ◽

Structured Interviews ◽

Older Population ◽

Incurable Cancer ◽

Femmes Âgées

ABSTRACTAmong the older population in Canada, the majority of whom are women, incurable cancer is rampant. Having incurable cancer often implies suffering. Studies reveal that communication with one’s circle is therefore often arduous, leading us to believe that it can cause suffering. To our knowledge, there has been no research that specifically explores the suffering related to communication among older women with incurable cancer: this will be the objective of our article.This exploratory qualitative research is in humanistic psychology. It is based on a phenomenological analysis of the conceptual categories that emerged from 19 semi-structured interviews among 10 women aged 65 years and over with incurable cancer.The results reveal both the dynamic of silence, desired in order to prevent increased suffering, and sometimes imposed and a source of further suffering. They also reveal that the absence of listening, the imposition of silence, and the minimization of what these women say, also cause suffering. The consequences of disclosing one’s illness and its suffering are also explored.

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The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care

Palliative & Supportive Care ◽

10.1017/s1478951508000370 ◽

2008 ◽

Vol 6 (3) ◽

pp. 231-238 ◽

Cited By ~ 28

Author(s):

Christina Melin-Johansson ◽

Gunvor Ödling ◽

Bertil Axelsson ◽

Ella Danielson

Keyword(s):

Quality Of Life ◽

Home Care ◽

Family Caregivers ◽

Well Being ◽

The Body ◽

Incurable Cancer ◽

Palliative Home Care ◽

Breathing Space ◽

At Home

ABSTRACTObjective:The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.Methods:To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.Results:Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.Significance of results:This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

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