Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames. Specifically, I elaborate on the production of lives (not) worth living and explore how family members welcomed the death of a loved one with dementia. I argue that the welcoming of death is not an act of indifference but can be seen as a form of care.
Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.
OBJECTIVE: People often report positive psychological changes after adversity, a phenomenon known as posttraumatic growth (PTG). Few PTG-focused interventions have been rigorously tested, and measurement strategies have had significant limitations. This study evaluated the effects of a new group-format psychosocial intervention, SecondStory, aimed at facilitating PTG by helping participants make meaning of the past and plan a purposeful future.
METHOD: In a randomized controlled trial, adults (N = 112, 64% women) bereaved within 5 years were randomly assigned to SecondStory or an active control, expressive writing. The primary outcome, PTG, was measured using two contrasting methods: the Posttraumatic Growth Inventory, which asks participants retrospectively how much they believe they have changed due to struggling with adversity, and the Current-Standing Posttraumatic Growth Inventory, which tracks quantifiable change in participants' standing in PTG domains over time. Secondary outcomes included depression symptoms, posttraumatic stress symptoms, and life satisfaction. Outcomes were measured at 2-week intervals: pretest, posttest, and three follow-up occasions. Hierarchical linear modeling was used to assess whether SecondStory participants experienced greater gains in primary and/or secondary outcomes over the 8-week trial.
RESULTS: Results indicated that SecondStory participants did not show significantly greater improvements than control participants on measures of PTG, posttraumatic stress, or life satisfaction, but they did show greater decreases in depression symptoms by the first follow-up.
CONCLUSIONS: These findings suggest that SecondStory may not facilitate PTG more effectively than existing interventions but may be promising for addressing depression. Positive interventions may productively be refined to support people experiencing trauma and loss.
BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
Background: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.
Method: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components.
Discussion: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.
Trial registration: Open Science Framework, 46033. Registered 19 April 2018.
OBJECTIVES: The review aims to identify available evidence related to the effects of dignity therapy on dignity, psychological well-being, and quality of life (QoL) among patients with cancer under palliative care.
METHODS: Thirteen electronic databases were searched for published articles in English or Chinese from inception to May 2018. Methodological rigour was assessed through the Joanna Briggs Institute (JBI) checklist for randomised controlled trials and quasi-experimental studies. Sufficient data from four trials were statistically pooled with Review Manager; otherwise, a narrative summary was used.
RESULTS: Ten articles describing eight studies met the selection criteria and were included in the review. None of the studies met all JBI checklist criteria. Meta-analysis results revealed that dignity therapy significantly improved dignity-related distress in existential distress domain (mean differences [MD]: -0.26, 95% CI, -0.50 to -0.02, .03) and social support domain (MD: -0.23, 95% CI, -0.39 to -0.07, .004), but nonsignificant improved depression and anxiety. Narrative summaries indicated that dignity therapy exerted positive effects on patients' dignity, psychological well-being, and QoL.
CONCLUSIONS: Dignity therapy is a promising approach to improve psychological well-being among patients with cancer under palliative care. However, the effects of dignity therapy on dignity and QoL are inconsistent. Further extensive studies should measure the impact of dignity therapy through qualitative and quantitative approaches to establish outcomes in psychological well-being. Studies with sensitivity to the cultural context within which dignity therapy applied should be conducted to explore its effects on patients with cancer at the early stages of illness trajectory.
INTRODUCTION: End-of-life (EoL) care professionals are prone to burnout given the intense emotional nature of their work. Previous research supports the efficacy of art therapy in reducing work-related stress and enhancing emotional health among professional EoL caregivers. Integrating mindfulness meditation with art therapy and reflective awareness complementing emotional expression has immense potential for self-care and collegial support. Mindful-compassion art therapy (MCAT) is a novel, empirically informed, and highly structured intervention that aims to reduce work-related stress, cultivate resilience, and promote wellness. This study aims to assess the potential effectiveness of MCAT for supporting EoL care professionals in Singapore.
METHODS: This is an open-label waitlist randomized controlled trial. Sixty EoL care professionals, including doctors, nurses, social workers, and personal care workers, are randomly allocated to one of two groups: (i) an intervention group that receives MCAT immediately and (ii) a waitlist-control group that receives MCAT after the intervention group completes treatment. Face-to-face self-administered outcome assessments are collected at three different time points-baseline (T1) for both groups, post-intervention (T2), and 6-week follow-up (T3) for intervention group-as well as pre-intervention (T2) and post-intervention (T3) for the waitlist-control group. The primary outcome measure is burnout, and secondary measures include emotional regulation, resilience, compassion, quality of life, and death attitudes. Between- and within-participant comparisons of outcomes are conducted, and the appropriate effect size estimates are reported. An acceptability and feasibility study is to be conducted by using a triangulation of qualitative data with framework analysis.
DISCUSSION: The outcomes of this study will contribute to advancements in both theories and practices for supporting professional EoL caregivers around the world. It will also inform policy makers about the feasibility, acceptability, and effectiveness of delivering a multimodal psycho-socio-spiritual intervention within a community institutional setting. The study has received ethical approval from the institutional review board of Nanyang Technological University.
This research aimed to explore the role of workplace responses in psychologists’ adaptation to client suicides. Participants were 178 psychologists who completed an online self-report questionnaire which included both open and closed questions yielding qualitative and quantitative data. Fifty-six (31.5%) participants reported one or more client suicides. Mixed results were found in terms of perceived support from the workplace following a client suicide. Psychologists reported a need for more open communication in the workplace, peer supports, space to grieve, as well as opportunities to engage in a learning process. The findings have important implications for research and for understanding the role of the workplace postvention. It also raises the need for external support to be accessible for psychologists working in private practice.
Healthcare professionals are often confronted with situations that increase their levels of stress and emotional fatigue, particularly in hospice or palliative care, because of direct contact with dying patients that can contribute to risk of burnout. Psychological support for doctors and nurses is crucial to voice any anxiety or distress experienced.This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo.Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
Cet article fait état d’une étude préparatoire portant sur le suivi psychologique de patients hospitalisés en secteur protégé d’hématologie. La littérature anglo-saxonne, dont les auteures ont publié une recension, montre que le secteur protégé est délétère pour la santé psychologique des patients et qu’il est nécessaire de penser aux modalités de prise en charge psychologique. Il existe peu d’études en France sur ce sujet. Le présent travail rend compte, sous forme de trois études de cas, d’une phase exploratoire au cours de laquelle les patients ont été inclus dans un dispositif basé sur l’aire transitionnelle et le soutien à la narrativité. Les résultats de cette étude montrent que : 1/les modalités de régression dont dispose le sujet, elles-mêmes liées à sa tolérance à supporter la passivité sont déterminantes pour affronter la maladie et l’isolement ; 2/cette expérience extrême fait caisse de résonance, réactivant chez les patients des pans douloureux de leur histoire.
Background: Observations indicate that struggling with a burden of an incurable disease such as advanced chronic obstructive pulmonary disease (COPD) may result in the weakening of an individual sense of dignity, and be a source of spiritual suffering. Clinicians providing respiratory care to patients should be open to their spiritual needs, in the belief it may improve coping with the end-of-life COPD.
Objectives: The study aimed to assess overall feasibility and potential benefits of Dignity Therapy (DT) in patients with advanced COPD. Methods: Patients with severe COPD, in whom a DT intervention was implemented according to the protocol established by Chochinov et al were included into the study. An self-designed questionnaire was applied to assess the patients' satisfaction after intervention. Subsequently, the patients' statements were allocated to specific problem categories, corresponding to the spiritual suffering concerns, as structured by Groves and Klauser.
Results: DT was completed in 10 patients, with no unexpected side effects. Satisfaction Questionnaire showed a positive effect of DT on the patient' well-being (3.9 on a 5-point Likert scale). The analyses of the patients' original statements enabled an effective identification of the spiritual suffering and spiritual resources and faced by COPD patients.
Conclusion: DT is an intervention well received by COPD patients, which may help them in recognising and fulfilling their spiritual needs in the last phase of their life. Information acquired on the patients' resources and spiritual challenges may help clinicians improve their care, especially with regard to supporting their patients at the end-of-life stage.
OBJECTIVE: To describe psycho-oncological care structures and processes in German breast cancer centres from the perspective of the centre administration.
METHODS: The findings are based on a postal survey of a representative random sample of surgical sites of certified breast cancer centres in Germany. Data were collected in 2013 and 2014. The questionnaire included questions about infrastructure, patient information standards, psycho-oncological services and aspects of organisational culture. Data analyses included frequencies, means and bivariate relationships.
RESULTS: The return rate was 88.3% (53 hospital sites). Psycho-oncological care is provided by permanent employees in 87%. The average number of full-time-equivalent employees (FTE) is 1.23. Most breast cancer centres engage the occupational group of psycho-oncologists for psycho-oncological care (90%), followed by the medical service (80%) and breast care nurses (78%) (multiple answers were possible). The correlation coefficient between FTEs and surgical treatments per year is not significant (r=0.292, p=0.051). Hospitals are screening every inpatient for the need of psycho-oncological support in 76% of all sites. Frequently used screening instruments are distress thermometer (19%), clinical interview (13%) and basic psycho-oncological documentation (11%).
CONCLUSION: Our data provide insights into the self-reported structural and procedural quality of psycho-oncological care in German breast cancer centres. Further research should examine patient and caregiver perspective on the psycho-oncological services provided by breast cancer centres.
Les soins palliatifs sont encore souvent mal connus tant du grand public que des professionnels de santé. Sous un abord psychanalytique, cet ouvrage propose d'en dessiner les contours. Il en pose les jalons, décrit la fonction d'accompagnant de la personne en fin de vie et offre des pistes de compréhension des principales problématiques par l'exposé d'une clinique variée. Illustré de nombreux exemples, il offre les outils à tous les intervenants pour une meilleure prise en charge du patient, et de son entourage.
Ni expert ni soignant, ni proche du malade, le bénévole se situe sur une ligne de crête. Le paradoxe se retouve ainsi redit : la distance affective avec le malade garantit une proximité entre deux êtres distincts et mêmes Accompagner les bénévoles, qui ne formulent aucune demande d'aide, suppose que le psychologue accueille leur vulnérabilité, puisse entendre leur difficulté ou leur maladresse face à telle situation, traduites à mots couverts ou de façon oblique.
BACKGROUND: Mindfulness-based interventions for health care providers have shown benefits for provider wellbeing and for their patients, but established programs are time-intensive.
OBJECTIVE: To establish the feasibility of a brief mindfulness-based curriculum focused on self-care for an interprofessional group of palliative care providers within the regular workday, and to evaluate the effectiveness of the curriculum in improving the levels of burnout, mindfulness, use of mindfulness meditation practices, and stress levels.
DESIGN: Pre-, one-week post-, and seven-month post-intervention survey assessment. The intervention was conducted in five monthly one-hour sessions.
SETTING: Participants were 29 mixed-professional-background usual-attendees of a monthly educational conference in a well-established palliative care group within an academic medical center.
MEASUREMENTS: Paired, confidential assessments using validated scales (the Five Facet Mindfulness Questionnaire, the Maslach Burnout Inventory, the Ten-item Perceived Stress Scale), report of use of informal and formal mindfulness techniques, narrative data, and satisfaction ratings.
RESULTS: Participants reported high satisfaction with the series and showed statistically significant improvements in dimensions of mindfulness and mindfulness practices, sustained for seven months. Burnout levels in this group were much lower than reported national rates; no statistically significant change was seen in burnout over the study period. Narrative data demonstrated retention of curricular content.
CONCLUSIONS: Delivery of a mindfulness-based self-care series to an interprofessional group of palliative care providers within the regular workday was feasible, well received, and associated with increased mindfulness levels, mindfulness practices, and knowledge.
PURPOSE: Life review therapy combined with memory specificity training (LRT-MST) is effective in cancer patients in palliative care, but the effect size is moderate. The aim of this qualitative study was to obtain more in-depth knowledge on motivation to start with LRT-MST, experiences with LRT-MST, and perceived outcomes of LRT-MST.
METHODS: Semi-structured interviews were conducted with 20 cancer patients in palliative care who participated in a randomized controlled trial investigating the effect of LRT-MST. All interviews were digitally recorded and transcribed verbatim. Data were analyzed by means of thematic analysis independently by two coders and coded into key issues and themes.
RESULTS: Patients started LRT-MST for intrinsic (e.g., potential benefit for personal well-being) and extrinsic reasons (e.g., potential benefit for future patients). Patients indicated mainly positive experiences with the intervention. They appreciated sharing their memories and regaining memories with a specific focus on retrieving positive memories. Some disliked the fact that negative memories could not be addressed. Most patients perceived positive outcomes of the intervention belonging to the overarching themes "ego-integrity" and "psychological well-being" in the here and now, as well as in the nearby future (including end-of-life).
CONCLUSIONS: LRT-MST is of added value as a psychological intervention in palliative care. This study provided in-depth insight into reasons to start the intervention, and the experiences and outcomes, which are important to further tailor LRT-MST and for development or improvement of other psychological interventions targeting cancer patients in palliative care.
People rarely specify what “early intervention” following bereavement means, so we explored the views of experienced professionals working primarily with bereaved children. In an anonymous online survey, 84 mental health professionals answered questions about the content and timeframe of early intervention. The types of interventions varied, but conversation and support were most frequent. Most considered early intervention to mean before or during the first month following the loss. Although meta-analyses show little benefit of early intervention, professionals disagree and see the need to tailor interventions to the type of death, the situation of the family, and the intensity of reactions.
BACKGROUND: Specialised palliative care trials often fail to address intervention effects on caregiver anxiety and depression, particularly in bereavement. We evaluate effects of specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression in a randomised controlled trial (RCT).
METHODS: Patients with incurable cancer and limited antineoplastic treatment options and their caregivers, recruited from a university hospital oncology department, were randomised (1:1) to care as usual or accelerated transition from oncological treatment to home-based specialised palliative care. We assessed caregivers' symptoms of anxiety and depression with the Symptom Checklist-92 up to six months after randomisation and 19 months into bereavement, and estimated intervention effects in mixed effects models.
RESULTS: The ‘Domus’ trial enrolled 258 caregivers. The intervention significantly attenuated increases in caregivers’ symptoms of anxiety overall (estimated difference, -0.12; 95% confidence interval, -0.22 to -0.01, p = 0.0266), and symptoms of depression at eight weeks (-0.17; -0.33 to -0.02; p = 0.0314), six months (-0.27; -0.49 to -0.05; p = 0.0165), and in bereavement at two weeks (-0.28; -0.52 to -0.03; p = 0.0295) and two months (-0.24; -0.48 to -0.01; p = 0.0448).
CONCLUSIONS: This first RCT evaluating specialised palliative care with dyadic psychological support significantly attenuated caregiver anxiety and depression before and during bereavement. (Clinicaltrials.gov: NCT01885637).