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1.
Death Stud ; : 1-15, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38950572

RESUMO

The COVID-19 pandemic changed the way people lived, but also the way they died. It accentuated the physical, psychological, social, and spiritual vulnerabilities of patients approaching death. This study explored the lived experience of palliative inpatients during the pandemic. We conducted interviews with 22 palliative inpatients registered in a Canadian urban palliative care program, aimed to uncover how the pandemic impacted participants' experiences of approaching end-of-life. The reflexive thematic analysis revealed 6 themes: putting off going into hospital, the influence of the pandemic on hospital experience, maintaining dignity in care, emotional impact of nearing death, making sense of end-of-life circumstances and coping with end-of-life. Findings highlight the vulnerability of patients approaching death, and how that was accentuated during the pandemic. Findings reveal how the pandemic strained, threatened, and undermined human connectedness. These lived experiences of palliative inpatients offer guidance for future pandemic planning and strategies for providing optimal palliative care.

2.
Palliat Support Care ; 22(3): 517-525, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38178278

RESUMO

OBJECTIVES: To analyze the effects of Dignity Therapy (DT) on the physical, existential, and psychosocial symptoms of individuals with amyotrophic lateral sclerosis (ALS). METHODS: This is a mixed-methods case study research that used the concurrent triangulation strategy to analyze the effects of DT on 3 individuals with ALS. Data collection included 3 instances of administering validated scales to assess multiple physical symptoms, anxiety, depression, spiritual well-being, and the Patient Dignity Inventory (PDI), followed by the implementation of DT and a semi-structured interview. RESULTS: The scale results indicate that DT led to an improvement in the assessment of physical, social, emotional, spiritual, and existential symptoms according to the score results. It is worth noting that the patient with a recent diagnosis showed higher scores for anxiety and depression after DT. Regarding the PDI, the scores indicate improvements in the sense of dignity in all 3 cases, which aligns with the positive verbal reports after the implementation of DT. SIGNIFICANCE OF RESULTS: This study allowed us to analyze the effects of DT on the physical, existential, and psychosocial symptoms of individuals with ALS, suggesting the potential benefits of this approach for this group of patients. Participants reported positive effects regarding pain and fatigue, could reflect on their life trajectories, and regained their value and meaning.


Assuntos
Esclerose Lateral Amiotrófica , Humanos , Esclerose Lateral Amiotrófica/psicologia , Esclerose Lateral Amiotrófica/complicações , Esclerose Lateral Amiotrófica/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Pesquisa Qualitativa , Respeito , Pessoalidade , Inquéritos e Questionários , Qualidade de Vida/psicologia , Terapia da Dignidade
3.
J Clin Rheumatol ; 30(4): e115-e121, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38595276

RESUMO

BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.


Assuntos
Qualidade de Vida , Doenças Reumáticas , Humanos , Masculino , Feminino , Doenças Reumáticas/psicologia , Doenças Reumáticas/epidemiologia , Estudos Transversais , Pessoa de Meia-Idade , México/epidemiologia , Adulto , Pessoalidade , Idoso , Medidas de Resultados Relatados pelo Paciente , Angústia Psicológica , Comorbidade , Índice de Gravidade de Doença , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia
4.
Support Care Cancer ; 31(4): 250, 2023 Apr 06.
Artigo em Inglês | MEDLINE | ID: mdl-37022483

RESUMO

PURPOSE: Pancreatic cancer is a lethal disease. Many patients experience a heavy burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care alongside standard oncologic care results in improved QOL and survival in some cancer types. The benefit in advanced pancreatic cancer (APC) is not fully quantified. METHODS: In this prospective case-crossover study, patients ≥ 18 years old with APC were recruited from ambulatory clinics at a tertiary cancer center. Patients underwent a palliative care consultation within 2 weeks of registration, with follow up visits every 2 weeks for the first month, then every 4 weeks until week 16, then as needed. The primary outcome was change in QOL between baseline (BL) and week 16, measured by Functional Assessment of Cancer Therapy - hepatobiliary (FACT-Hep). Secondary outcomes included symptom control (ESAS-r), depression, and anxiety (HADS, PHQ-9) at week 16. RESULTS: Of 40 patients, 25 (63%) were male, 28 (70%) had metastatic disease, 31 (78%) had ECOG performance status 0-1, 31 (78%) received chemotherapy. Median age was 70. Mean FACT-hep score at BL was 118.8, compared to 125.7 at week 16 (mean change 6.89, [95%CI (-1.69-15.6); p = 0.11]). On multivariable analysis, metastatic disease (mean change 15.3 [95%CI (5.3-25.2); p = 0.004]) and age < 70 (mean change 12.9 [95%CI (0.5-25.4); p = 0.04]) were associated with improved QOL. Patients with metastatic disease had significant improvement in symptom burden (mean change -7.4 [95%CI (-13.4 to -1.4); p = 0.02]). There was no difference in depression or anxiety from BL to week 16. CONCLUSION: Palliative care should be integrated early in the journey for patients with APC, as it can improve QOL and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03837132.


Assuntos
Neoplasias , Neoplasias Pancreáticas , Adolescente , Idoso , Feminino , Humanos , Masculino , Estudos Cross-Over , Cuidados Paliativos/métodos , Neoplasias Pancreáticas/terapia , Pacientes , Qualidade de Vida , Neoplasias Pancreáticas
5.
BMC Palliat Care ; 22(1): 192, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38037061

RESUMO

BACKGROUND: The pandemic Era has forced palliative care professionals to use a dignity-in-care approach in different settings from the classic ones of palliative care: acute and intensive care. We explored the meanings of dignity for patients, their family members, and clinicians who have experienced COVID-19 in the acute and intensive care setting. METHODS: A qualitative, prospective study by means of semi-structured interviews with patients hospitalized for COVID-19, family members, and clinicians who care for them. FINDINGS: Between March 2021 and October 2021, we interviewed 16 participants: five physicians, three nurses, and eight patients. None of the patients interviewed consented for family members to participate: they considered it important to protect them from bringing the painful memory back to the period of their hospitalization. Several concepts and themes arose from the interviews: humanity, reciprocity, connectedness, and relationship, as confirmed by the literature. Interestingly, both healthcare professionals and patients expressed the value of informing and being informed about clinical conditions and uncertainties to protect dignity. CONCLUSIONS: Dignity should be enhanced by all healthcare professionals, not only those in palliative care or end-of-life but also in emergency departments.


Assuntos
COVID-19 , Pandemias , Humanos , Respeito , Estudos Prospectivos , Cuidados Paliativos , Pesquisa Qualitativa
6.
Death Stud ; : 1-13, 2023 Nov 08.
Artigo em Inglês | MEDLINE | ID: mdl-37938174

RESUMO

COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020-July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

7.
Palliat Support Care ; 21(1): 74-82, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35586874

RESUMO

OBJECTIVE: Dignity therapy (DT) is a brief psychotherapeutic intervention with beneficial effects in the end-of-life experience. Since it provides a continuing bond between the bereaved and their loved ones, we speculated that it could be offered as a novel bereavement intervention following the patient's death. We aimed to develop, translate, and validate the Posthumous DT Schedule of Questions (p-DT-SQ), for administration with bereaved relatives or friends. METHOD: The original DT-SQ was adapted for application with bereaved relatives or friends. It was translated and back-translated to European Portuguese and revised by an expert committee. Content validity was assessed by the Content Validity Coefficient (CVC). The instrument was tested in a sample of 50 individuals from a large Senior Residence in Lisbon (10 elderly people and 40 healthcare professionals), who assessed face validity. RESULTS: The p-DT-SQ showed very good CVC (0.94) and face validity: it was considered clear, easy to understand, reasonable in length, and not difficult to answer. Participants felt comfortable answering the p-DT-SQ and felt it could positively affect the way themselves or others would remember their loved ones, allowing an understanding of the deceased's concerns, interests, and values. SIGNIFICANCE OF RESULTS: We created and validated an adapted version of the DT-SQ to be used posthumously by bereaved family and friends. The European Portuguese version of the p-DT-SQ is clear, comprehensible, and aligned with the fundamentals of DT. While our data suggest its beneficial effects for those who are bereft, future research is needed to examine the impact of p-DT-SQ for those who are grieving.


Assuntos
Luto , Assistência Terminal , Humanos , Idoso , Respeito , Portugal , Inquéritos e Questionários
8.
Palliat Support Care ; : 1-7, 2023 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-37671583

RESUMO

OBJECTIVES: Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools. METHODS: The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool. RESULTS: Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified "family relationships," "global pain," and "family roles and accomplishments" as being of most importance to patients. SIGNIFICANCE OF RESULTS: The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient-caregiver and patient-HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

9.
Palliat Support Care ; 21(5): 856-862, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37052333

RESUMO

OBJECTIVES: Dignity therapy (DT) was developed to help patients at their end of life to reframe and give meaning to their illness process. The DT question protocol focuses on personhood and important aspects of the individual's life. This study aimed to translate and culturally adapt the Dignity Therapy Question Protocol (DTQP) to Brazilian Portuguese. METHODS: This was a descriptive and methodological study, and cross-cultural adaptation process comprised 4 stages: (1) translation and synthesis of English original version protocol into Brazilian Portuguese, (2) back translation, (3) experts committee, and (4) pretest. RESULTS: The Portuguese version of the DTQP - Protocolo de Perguntas sobre Terapia da Dignidade - demonstrated a content validity index of 1 for all equivalences. The initial sample consisted of 41 participants (9 [21.9%] refused to participate and 1 [2.43%] dropped out). The pretest was applied to 30 (73.1%) participants, 15 of them were female and the mean age was 53.4 years. The final version consisted of 10 questions that were approved by the original authors who affirmed that the DTQP Brazilian Portuguese version maintained the original English characteristics. SIGNIFICANCE OF RESULTS: The Brazilian cultural adaptation of the DTQP was well understood by patients. It will be very useful in palliative care clinical practice for patients nearing end of life. The adapted version to Brazilian Portuguese will facilitate future studies using the DTQP.


Assuntos
Comparação Transcultural , Respeito , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Brasil , Inquéritos e Questionários , Traduções , Morte , Reprodutibilidade dos Testes
10.
Palliat Support Care ; : 1-9, 2023 Sep 22.
Artigo em Inglês | MEDLINE | ID: mdl-37734916

RESUMO

OBJECTIVES: Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life. METHODS: We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression. RESULTS: Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty). SIGNIFICANCE OF RESULTS: These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

11.
Palliat Support Care ; : 1-5, 2023 Aug 11.
Artigo em Inglês | MEDLINE | ID: mdl-37565429

RESUMO

OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.

12.
Psychooncology ; 31(4): 676-679, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35226396

RESUMO

OBJECTIVE: To examine Dignity Therapy (DT) narratives in patients with severe mental illness (SMI) and a control group of cancer patients. METHODS: 12 patients with SMI (schizophrenia, bipolar disorders, sever personality disorders) and 12 patients with non-advanced cancer individually participated to DT interviews. DT was tape-recorded, transcribed verbatim and shaped into a narrative through a preliminary editing process. A session was dedicated to the final editing process along with the participant, with a final written legacy (generativity document) provided to the participant. Interpretative Phenomenological Analysis was used to qualitatively analyze the generativity documents. RESULTS: Patients with SMI and patients with cancer presented similar main narrative categories relative to dignity, such as "Meaning making", "Resources", "Legacy", "Dignity"; in addition, inpatients with SMI "Stigma" and inpatients with cancer "Injustice" emerged as separate categories. Patients in both groups strongly appreciated DT as an opportunity to reflect on their life story and legacy. CONCLUSIONS: The study showed that DT is a valuable intervention for people with SMI, grounded in a practical, person-centered approach. All patients found DT as an opportunity to describe their past and present, highlighting changes in the way they relate to themselves and others. These results can guide implementation of DT in mental health settings for people with SMI, as it is for people with cancer.


Assuntos
Transtornos Mentais , Neoplasias , Humanos , Transtornos Mentais/psicologia , Transtornos Mentais/terapia , Narração , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Respeito
13.
BMC Palliat Care ; 21(1): 8, 2022 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-35016670

RESUMO

OBJECTIVES: Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. METHODS: For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. RESULTS: Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92. CONCLUSIONS: Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.


Assuntos
Neoplasias , Respeito , Idoso , Estudos Transversais , Feminino , Humanos , Pacientes Ambulatoriais , Reprodutibilidade dos Testes
14.
Palliat Support Care ; 20(1): 107-112, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33658104

RESUMO

OBJECTIVE: Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables. METHOD: Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020. RESULTS: We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0-26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables. SIGNIFICANCE OF RESULTS: Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors.


Assuntos
Cuidados Paliativos , Telefone , Idoso , Humanos , Masculino , Dor , Portugal , Estudos Retrospectivos
15.
Palliat Support Care ; 20(1): 62-68, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33942707

RESUMO

Lung cancer (LC) is the most frequent and deadly neoplasm in the world, and patients have shown a tendency to have more emotional distress than other cancer populations. Dignity Therapy (DT) is a brief intervention aimed to improve emotional well-being in patients facing life-threatening illness. OBJECTIVE: To analyze the effect of DT on anxiety, depression, hopelessness, emotional distress, dignity-related distress, and quality of life (QoL) in a group of Mexican patients with stage IV LC undergoing active medical treatment with baseline emotional distress. METHOD: In this preliminary pretest-posttest study, patients received three sessions of DT and were evaluated with the HADS, Distress Thermometer, Patient Dignity Inventory, single-item questions, and QLQ-30. RESULTS: In total, 24 out of 29 patients completed the intervention. Statistically significant improvements were found in anxiety, depression, emotional distress, hopelessness, and dignity-related distress with large effect sizes. Patients reported that DT helped them, increased their meaning and purpose in life, their sense of dignity, and their will to live, while it decreased their suffering. No changes were found in QoL. SIGNIFICANCE OF RESULTS: DT was well accepted and effective in improving the emotional symptoms of LC patients with distress that were undergoing medical treatment. Although more research is warranted to confirm these results, this suggests that DT can be used in the context of Latin-American patients.


Assuntos
Neoplasias Pulmonares , Neoplasias , Angústia Psicológica , Ansiedade/diagnóstico , Ansiedade/etiologia , Ansiedade/terapia , Depressão/etiologia , Humanos , Neoplasias Pulmonares/complicações , Neoplasias Pulmonares/terapia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Respeito , Estresse Psicológico/diagnóstico , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Inquéritos e Questionários
16.
Palliat Support Care ; 20(3): 321-327, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35713352

RESUMO

OBJECTIVE: Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions. METHODS: We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts. RESULTS: Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units. SIGNIFICANCE OF RESULTS: This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.


Assuntos
Empatia , Respeito , Idoso , Comunicação , Estudos de Viabilidade , Humanos , Pessoa de Meia-Idade , Reprodutibilidade dos Testes
17.
Palliat Support Care ; 20(2): 189-195, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34172103

RESUMO

OBJECTIVES: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis. METHOD: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes. RESULTS: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes". SIGNIFICANCE OF RESULTS: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.


Assuntos
Respeito , Assistência Terminal , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Pessoalidade , Portugal , Inquéritos e Questionários
18.
Palliat Support Care ; 20(2): 178-188, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34036932

RESUMO

BACKGROUND: Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. OBJECTIVE: The objective of this article is to describe a detailed method for DT therapist training. METHOD: Chochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites. RESULTS: The DT experts' verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol. DISCUSSION: The DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.


Assuntos
Cuidados Paliativos , Respeito , Humanos , Cuidados Paliativos/métodos , Reprodutibilidade dos Testes
19.
Palliat Support Care ; 19(4): 457-463, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-32985408

RESUMO

OBJECTIVE: Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. SIGNIFICANCE OF RESULTS: Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.


Assuntos
Serviços de Assistência Domiciliar , Neoplasias , Idoso , Humanos , Masculino , Neoplasias/complicações , Cuidados Paliativos , Portugal , Prevalência , Estudos Retrospectivos
20.
Palliat Support Care ; 19(1): 69-74, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32580800

RESUMO

OBJECTIVE: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. METHOD: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018-January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question "Are you depressed?" (SQD), (3) the question "Do you feel anxious?" (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). RESULTS: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). SIGNIFICANCE OF RESULTS: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.


Assuntos
Neoplasias , Cuidados Paliativos , Idoso , Feminino , Humanos , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Portugal , Qualidade de Vida , Estudos Retrospectivos , Avaliação de Sintomas
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