Dialogue consacre un dossier aux réactions et aux traumatismes des familles face à l'annonce de la maladie, du handicap ou du décès d'un de leur membre. Les contributeurs étudient notamment les différents accompagnements et interventions psychothérapeutiques individuelles ou groupales permettant d'aider les familles confrontées à ces situations.
Si le deuil compliqué est aujourd’hui une entité clinique reconnue chez l’adulte, il reste encore particulièrement difficile à appréhender chez l’enfant, tout comme le sont les autres complications du deuil. Dans le présent article, nous rappelons d’abord la spécificité du deuil chez l’enfant. Puis, nous évoquons ce qu’il en est des complications du deuil infantile. Et finalement, nous abordons les perspectives de prises en charge possibles de ces enfants et de leurs proches dans ces contextes si spécifiques de deuil compliqué.
Dignity has gained increasing attention as a vital component of quality of life and quality of end-of-life care. This article reviews psychological, spiritual, existential, and physical issues facing patients at the end of life as well as practical considerations in providing therapy for this population. The authors reviewed several evidence-based treatments for enhancing end-of-life experience and mitigating suffering, including a primary focus on dignity therapy and an additional review of meaning-centered psychotherapy, acceptance and commitment therapy, and cognitive-behavioral therapy. Each of these therapies has an emerging evidence base, but they have not been compared to each other in trials. Thus, the choice of psychotherapy for patients at the end of life will reflect patient characteristics, therapist orientation and expertise with various approaches, and feasibility within the care context. Future research is needed to directly compare the efficacy and feasibility of these interventions to determine optimal care delivery.
Après le récit de la mort de son propre frère lorsqu'elle était enfant, la psychothérapeute Marie-Camille Carton de Wiart analyse divers témoignages de personnes ayant perdu un proche, recueillis au cours de sa pratique de spécialiste de l'accompagnement du deuil. Elle propose ensuite une démarche de méditation des textes bibliques destinée à accompagner ceux qui traversent cette épreuve.
Introduction: Dignity Therapy (DT) is a brief, individualized, narrative psychotherapy developed to reduce psychosocial and existential distress, and promote dignity, meaning, and hope in end of life patients. Previous studies have shown that DT was effective in reducing anxiety and depression, and improving dignity-related distress. However, less is known about its efficacy on spiritual well-being. The aim of this study is to contribute to the existing literature by investigating the effects of DT on specific dimensions of spiritual well-being, demoralization and dignity-related distress in a sample of terminally ill patients.
Methods: A randomized, controlled trial was conducted with 64 terminally ill patients who were randomly assigned to the intervention group (DT + standard palliative care) or the control group (standard palliative care alone). The primary outcome measures were Meaning, Peace, and Faith whereas the secondary outcome measures were (loss of) Meaning and purpose, Distress and coping ability, Existential distress, Psychological distress, and Physical distress. All measures were assessed at baseline (before the intervention), 7-10 and 15-20 days after the baseline assessment. The trial was registered with ClinicalTrials.gov (Protocol Record NCT04256239).
Results: The MANOVA yielded a significant effect for the Group X Time interaction. ANOVA with repeated measures showed a significant effect of time on peace and a significant Group X Time interaction effect on peace. Post hoc comparisons revealed that, while there was a decrease in peace from pre-treatment to follow-up and from post-treatment to follow-up in the control group, there was no such trend in the intervention group. Discussion: This study provides initial evidence that patients in the DT intervention maintained similar levels of peace from pre-test to follow-up, whereas patients in the control group showed a decrease in peace during the same time period. We did not find significant longitudinal changes in measures of meaning, faith, loss of meaning and purpose, distress and coping ability, existential, psychological and physical distress. The findings of our study are of relevance in palliative care and suggest the potential clinical utility of DT, since they offer evidence for the importance of this intervention in maintaining peace of mind for terminally ill patients.
BACKGROUND: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.
OBJECTIVE: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.
METHODS: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.
RESULTS: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.
CONCLUSIONS: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.
BACKGROUND: Psychological distress is highly prevalent among patients with metastatic colorectal cancer.
AIMS: To perform an economic evaluation of a combined screening and treatment program targeting psychological distress in patients with metastatic colorectal cancer in comparison with usual care.
DESIGN: Societal costs were collected alongside a cluster randomized controlled trial for 48 weeks. A total of 349 participants were included.
SETTING: Participants were recruited from oncology departments at 16 participating hospitals in the Netherlands.
METHODS: Outcome measures were the Hospital Anxiety and Depression Scale and quality-adjusted life-years. Missing data were imputed using multiple imputation. Uncertainty was estimated using bootstrapping. Cost-effectiveness planes and cost-effectiveness acceptability curves were estimated to show uncertainty surrounding the cost-effectiveness estimates. Sensitivity analyses were performed to check robustness of results.
RESULTS: Between treatment arms, no significant differences were found in Hospital Anxiety and Depression Scale score (mean difference: -0.058; 95% confidence interval: -0.13 to 0.011), quality-adjusted life-years (mean difference: 0.042; 95% confidence interval: -0.015 to 0.099), and societal costs (mean difference: -1152; 95% confidence interval: -5058 to 2214). Cost-effectiveness acceptability curves showed that the probability of cost-effectiveness was 0.64 and 0.74 at willingness-to-pay values of €0 and €10,000 per point improvement on the Hospital Anxiety and Depression Scale, respectively. The probability that the intervention was cost-effective compared to usual care for quality-adjusted life-years was 0.64 and 0.79 at willingness-to-pay values of €0 and €20,000 per quality-adjusted life-year, respectively.
CONCLUSION: The intervention is dominant over usual care, primarily due to lower costs in the intervention group. However, there were no statistically significant differences in clinical effects and the uptake of the intervention was quite low. Therefore, widespread implementation cannot be recommended.
Alors que nous tous prenons de l'âge naturellement, parler du vieillissement relève quasiment du tabou. Si d'aventure, on en parle, c'est pour proposer des remèdes suggérant qu'un ensemble d'inconvénients, et pas des moindres, nous attendent. Rien d'étonnant alors que beaucoup de préjugés soient véhiculés sur ce sujet, préjugés auxquels ce livre propose de répondre d'un point de vue psychologique.
Effectivement, la psychologie du vieillissement, vue du côté de la santé – car une psychothérapie vise la santé psychique – est rarement abordée. L'auteur, fait part ici, aussi bien d'exemples émanant de son expérience clinique avec des patients âgés que de la formation des jeunes psychologues à l'Université. Ainsi, nombreux sont les sujets abordés en se plaçant tantôt du côté de la personne concernée, vieillissante ou déjà âgée, tantôt du côté du clinicien.
L'aspect sociétal quant à notre rapport au vieillissement et à la mort est également évoqué et une comparaison avec d'autres cultures est proposée. Le lecteur verra qu'on peut tout à fait parler de l'âge avec humour, car avant tout, la façon dont nous vieillissons nous révèle ce que nous sommes réellement. Nous écouter demande d'acquérir une certaine distance par rapport à nous mêmes et surtout exige de la bonne humeur, source de sérénité.
Ce livre se lit à tout âge, car il n'y a pas d'âge pour vieillir.
Background: The Patient Dignity Question (PDQ) is a single question, which directly asks the patient, “What should I know about you as a person to help me take the best care of you that I can?” Research has demonstrated that the PDQ enhances quality health care within an inpatient palliative care setting; however, no research to date has examined the PDQ in an outpatient setting, particularly a psycho-oncology setting.
Objective: The PDQ was administered as part of routine clinical care in an outpatient psycho-oncology clinic to enhance patient-centered care.
Methods: Individuals diagnosed with cancer (n = 66) were referred for individual psychotherapy primarily for anxiety and/or depression. After gathering a thorough patient history during the initial psychology consult, patients were asked the PDQ as it was worded without further prompting. Patient responses were then qualitatively analyzed to measure the most common themes.
Results: The themes expressed by patients in response to the PDQ included Who I Am (59.7%), which referenced individual characteristics and core personality traits, What My Cancer Journey Has Been (21.7%) described how patients' lives have been impacted since receiving a cancer diagnosis, and What I Want to Achieve (18.4%) in which patients described what goals they wanted to achieve in their lives (both general and specific to psychotherapy).
Conclusions: Data from this small pilot study show promise that this brief assessment tool can be readily added to a psychological intake assessment and patients appreciated being asked about their personhood. Incorporating the PDQ into standard psychological care allows patients to be “seen” and helps us to acknowledge the person in the patient.
OBJECTIVE: To compare Individual Meaning-Centered Psychotherapy-Palliative Care (IMCP-PC) to counselling-based psychotherapy in patients receiving home palliative care (PC).
METHODS: Fifty-one patients with advanced-stage cancer receiving home PC were recruited for this. Two-arm (individual meaning-centered psychotherapy-palliative-IMCP-PC-care vs. counselling) randomized feasibility trial. Anxiety, depression, demoralization, and emotional distress were evaluated before and after three psychotherapy sessions. Patient perceptions of the treatment were assessed after completion of therapy.
RESULTS: Thirty-two patients (16 in each group) completed all three sessions as well as the pre- and post-therapy questionnaires and were therefore included in the final analysis. All patients in the IMCP-PC group showed a significant decrease in levels of demoralization (despair), anxiety, depression, and emotional distress. By contrast, the only variable that significantly improved in the counselling group was demoralization. The post-treatment questionnaire revealed no significant between-group differences regarding patient perception of the structure, focus, or length of treatment. However, the IMCP-PC group rated the treatment more highly with regard to its value in helping them to find meaning in life.
CONCLUSIONS: IMCP-PC is a specific psychotherapy tailored to the needs of patients with advanced cancer. The results of the present study indicate that this treatment is suitable for patients at end of life that are not able to attend outpatient sessions. Although more research is needed, the findings of this feasibility trial suggest that the IMCP-PC merits consideration for patients receiving home palliative care (PC).
Background: Dignity is a vitally important aspect of the lives of advanced cancer patients. We conducted a systematic review and meta-analysis of the effectiveness of dignity therapy in this patient population.
Methods: We searched for randomized controlled trials comparing dignity therapy versus standard care for patients with advanced cancer in five comprehensive databases (March 2019), two clinical trial registries and one gray literature database (August 2019). The quality of the studies was assessed using the risk of bias tool recommended by the Cochrane Handbook Version 5.1.0. We used GRADE approach to assess the certainty of evidence. Meta-analysis was performed with RevMan version 5.3. Outcomes of interest included anxiety, depression, dignity-related distress and quality of life (QoL).
Results: Ten trials evaluating 904 patients (control, 449; experimental, 455) were identified. Six trials included patients with different types of advanced cancer, and four trials included patients with a single advanced cancer (lung cancer [20%], breast cancer [10%], and hepatocellular carcinoma [10%]). Compared with the standard care, dignity therapy decreased the score of anxiety, depression, and dignity-related distress of the advanced cancer patients (SMD = -1.07, 95% CI: [-1.57, -0.58], p < .05; SMD = -1.31, 95% CI: [-1.92, -0.70], p < .05; MD = -7.30, 95% CI: [- 12.04, - 2.56], p < .05). In addition, no significant differences were found in the patient's QoL (p > .05).
Conclusion: Very low certainty evidence demonstrated that dignity therapy might be a promising treatment, especially in reducing anxiety and depression in advanced cancer patients.
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified "best practices" for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.
Background: Latino patients with advanced cancer need culturally responsive, effective psychotherapeutic interventions that can assist them in coping with their diagnosis and improve spiritual and existential well-being and psychological adjustment.
Objective: This study describes the cultural and linguistic adaptation of individual meaning-centered psychotherapy for Latinos with advanced cancer.
Design: A mixed-methods, concurrent integrative approach was used for this study, using the ecological validity and cultural adaptation process models as frameworks for cultural adaptation.
Setting/Subjects and Measurements: Quantitative and qualitative data were collected through (1) a survey of mental health professionals (n = 70) who offer services to Latino cancer patients; (2) a questionnaire for Latino patients with advanced cancer (n = 54), measuring relevant intervention concepts; and (3) in-depth interviews with 24 Latino patients.
Results: Quantitative findings showed that most of the goals and concepts were highly acceptable for patients and providers. The qualitative findings supported adaptations to include using more simple definitions; changing phrases that are challenging to translate and comprehend; using words that are common to all Latino cultures, providing more than one option if needed; simplifying the questions/reflections, as needed; changing the metaphors to be culturally congruent; and modifying content to make it responsive to Latino cultural values and norms.
Conclusions: Findings demonstrate the need for adaptation to achieve the aims of the intervention, accounting for both linguistic and cultural considerations, emphasizing issues related to literacy, cultural and linguistic diversity, cultural values, and culturally congruent content. The mixed-methods approach is described to provide recommendations for clinicians, researchers, and program developers.
INTRODUCTION: Emotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of 'emotional disclosure' in the palliative care setting. By mapping these to associated treatment objectives, outcome measures and explanatory frameworks, the review will inform future efforts to design and evaluate ED-based therapies in this population.
METHODS AND ANALYSIS: The review will be guided by Arksey and O'Malley's five-stage scoping review framework and Levac's extension. The following electronic databases will be searched from database inception: CENTRAL, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and MEDLINE. We will include peer-reviewed studies and reviews. We will also check grey literature, including clinical trial registers, conference proceedings and reference lists, as well as contacting researchers. Articles will be screened by at least two independent reviewers and data charted using an extraction form developed for this review. Results will be analysed thematically to create a taxonomy of interventions, outcome measures and theoretical frameworks.
ETHICS AND DISSEMINATION: This review does not require ethical approval as it is a secondary analysis of pre-existing, published data. The results will inform future research in the development of ED-based interventions and evaluation of their efficacy in the palliative care setting. We will disseminate findings through peer-reviewed journals.
This is an evidence-based case study examining the process and outcome of 22 prenatal sessions and 1 postpartum follow-up session of psychodynamic therapy for a woman pregnant after a history of repeated pregnancy losses. Self-report measures of depression, anxiety, pregnancy-specific anxiety, prenatal attachment, trauma, and perinatal grief were completed prior to each session. A session quality item was completed after each session and a therapy outcome measure at termination and follow-up. The therapist and the patient completed an exit interview on the therapy relationship, which focused on moments of tension or misunderstanding, over the course of treatment. All sessions were transcribed and scored by certified raters for reflective functioning. Results suggest that the patient experienced reliable and clinically significant change on all pregnancy-specific measures, with most change happening in the early phase of treatment. However, general symptoms of depression and anxiety were variable and highly volatile over time. Exit interviews suggest that therapist empathy and validation were helpful in promoting change on pregnancy-specific symptoms, whereas problems or ruptures in the alliance may have been associated with a lack of change on general psychiatric symptoms. The patient showed little change on reflective functioning, perhaps contributing to ruptures in psychotherapy and lack of change on general psychiatric symptoms.
OBJECTIVES: Prolonged grief disorder is associated with significant distress and impairment and thus efforts to improve treatments are essential. The present pilot study tested the efficacy and feasibility of group Metacognitive Grief Therapy (MCGT) designed specifically for prolonged grief symptomatology to reduce the psychological distress and impaired function resulting from bereavement.
DESIGN/PARTICIPANTS: Twenty-two bereaved adult participants with prolonged grief symptomatology were randomised to a wait-list control (n=10) or an intervention condition (n=12) with a 3-month and 6-month follow-up. The wait-list control group was offered treatment after the post-test assessment.
INTERVENTION: Participants attended six group MCGT sessions that ran for 2 hours per week.
OUTCOME MEASURES: A primary outcome measure of prolonged grief symptomatology and secondary outcome measures of depression, anxiety, rumination, metacognitive beliefs and quality of life were taken pretreatment and post-treatment for both groups and at the 3-month and 6-month follow-up for the intervention group. A Generalised Linear Mixed Model was used to assess treatment efficacy.
RESULTS: Post-treatment intent-to-treat analyses showed MCGT reduced prolonged grief symptomatology (Cohen's d=1.7), depression (d=1.3), anxiety (d=0.8), stress (d=1.0), rumination (d=0.9) and increased quality of life (d=0.6), and these effects were maintained at the 3-month and 6-month follow-ups. No prepost between-group differences were found in metacognitive beliefs. However, a large significant effect was identified at the 3-month and 6-month follow-ups (d=1.0).
CONCLUSION: The results show promise for the utility of group MCGT for reducing psychological distress and promoting quality of life. Additionally, the results underscore the need for a full randomised controlled trial of group MCGT, which may be an important addition to the treatment armamentarium available to support people with prolonged grief.
OBJECTIVE: In seriously ill cardiac patients, several psychotherapy efficacy studies demonstrate little to no reduction in depression or improvement in quality of life, and little is known about how to improve psychotherapies to best address the range of patient needs. An interpersonal and behavioral activation psychotherapy was a key component of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) multisite randomized clinical trial. Although depressive symptoms did improve in the CASA trial, questions remain about how best to tailor psychotherapies to the needs of seriously ill patient populations. The study objective was to describe psychosocial needs emerging during a clinical trial of a palliative care and interpersonal and behavioral activation psychotherapy intervention that were not specifically addressed by the psychotherapy.
METHOD: During the CASA trial, patient needs were prospectively tracked by the psychotherapist in each visit note using an a priori code list. Preplanned analysis of study data using directed content analysis was conducted analyzing the a priori code list, which were collapsed by team consensus into larger themes. The frequency of each code and theme were calculated into a percentage of visits.Result A total of 150 patients received one or more visits from the therapist and were included in the analysis. Participants screened positive for depressive disorder (47%), had poor heart failure-specific health status (mean Kansas City Cardiomyopathy Questionnaire score = 48.6; SD = 17.4), and multiple comorbidities (median 4.3). Common needs that emerged during the therapy included difficulty coping with fatigue (48%), pain (28%), and satisfaction issues with medical care (43%). The following broader themes emerged: social support (77% of sessions), unmet symptom needs (67%), healthcare navigation (48%), housing, legal, safety, and transportation (32%), and end of life (12%).Significance of results Coping with chronic symptoms and case management needs commonly emerged during psychotherapy visits. Future psychotherapy interventions in seriously ill populations should consider the importance of coping with chronic symptoms and case management.
The ability to infer psychological meaning in behaviour--referred to as psychological mindedness--has been posited as a patient characteristic that contributes to the therapy process, and consequently to therapeutic success. The present study was developed to examine the relationship between patients' psychological mindedness and improvement in patients' personal treatment goals in interpretive and supportive group therapies for complicated grief, along with patients' importance to group process. The study was conducted with a clinical sample of 109 patients (79% female; average 45 years old) receiving treatment for complicated grief. Patients provided severity of distress ratings for individual target objectives at pre- and post-treatment. Psychological mindedness was assessed prior to treatment using the video-based, interviewer-rated Psychological Mindedness Assessment Procedure. Patients' importance to the therapy process was rated by therapists and other patients in interpretive and supportive group therapy for complicated grief. Conditional process modelling tested whether psychological mindedness would contribute to patients' goal achievement through patients' importance to group process, moderated by type of therapy. A significant, conditional indirect effect was observed for psychological mindedness as a predictor of improvement in individual target objectives, through patients' importance to group process as rated by therapists, specifically in interpretive therapy. The findings indicate that patients' psychological mindedness significantly contributes to their achievement of individual goals through their contributions to group process in interpretive group therapy. Further research is needed to understand the facilitation of individual goal achievement in supportive therapy.
OBJECTIVE: To identify how therapists invite patients with advanced cancer to engage with alternative perspectives about their illness trajectory and their end of life.
METHODS: Sequences of talk in which a therapist introduced a patient to alternative perspectives, were transcribed and analysed using the method of conversation analysis.
RESULTS: The analysis identifies one subtle way a patient is invited to consider an alternative perspective relating to their disease progression. Meaning expansion enquiries invite the patient to expand on the meaning of an utterance and in doing so, implicitly problematize the singularity of the patient's assumptions, without directly challenging them. The questions work as preliminary moves, providing the patient with the opportunity to expand on their assumptions. This enables the therapist to subsequently present an alternative perspective in a way that incorporates the patient's expanded perspective.
CONCLUSION: The analysis reveals a skilful way in which therapists can cautiously and collaboratively introduce a patient to alternative perspectives concerning end-of-life, without invalidating the patient's perspective in this particularly delicate context.
PRACTICE IMPLICATIONS: Whilst mentalization is considered an important therapeutic process, the present study reveals precisely how this phenomenon can be enacted in therapy and within the particularly challenging context of end-of-life.
Pediatric palliative care is a comprehensive treatment approach (physical, psychological, social, spiritual) for children living with life-threatening conditions. These patients and siblings, as well as children of ill parents, face extraordinary psychological challenges. Structured art techniques incorporated into psychotherapy can be powerful for children dealing with life-and-death realities. This article provides the rationale, instructions, and examples for 3 techniques that the author has adapted for children facing illness and bereavement. Although these art techniques are simple to administer, they frequently evoke complex and powerful responses and thus are intended for use by or in consultation with mental health professionals.