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1.
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.

2.
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
3.
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
4.
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
5.
J Clin Nurs ; 27(9-10): 2083-2097, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29575539

RESUMO

AIMS AND OBJECTIVES: To explore healthcare provider perspectives and experiences of perceived barriers and facilitators of compassion. BACKGROUND: Compassion is considered a component of quality health care that healthcare providers are increasingly expected to provide. While there have been some studies exploring facets of healthcare providers' perspectives on the barriers and facilitators to providing compassion, a comprehensive understanding based on direct reports from healthcare providers is lacking. DESIGN: Data were collected via focus groups and semi-structured interviews. Data was analyzed in accordance with Straussian grounded theory. METHODS: Semistructured focus groups with frontline healthcare providers and individual interviews with peer-nominated exemplary compassionate care providers were audio-recorded, professionally transcribed and analysed. Fifty-seven participants were recruited from three healthcare settings within both rural and urban settings in Alberta, Canada, using convenience, snowball and theoretical sampling. RESULTS: Qualitative analysis of the data generated two categories and associated themes and subthemes delineating perceived barriers and facilitators to compassion. The first category, challenges to compassion, reflects participants' discomfort associating the notion of barriers to compassion and contained several themes participants conceptualised as challenges: personal challenges, relational challenges, systemic challenges and maladaptive responses. The second category, facilitators of compassion, included the themes of personal facilitators, relational facilitators, systemic facilitators and adaptive responses of intentional action. CONCLUSION: Although participants described certain factors such as system and time constraints along with interaction styles of patients and families that can challenge healthcare provider compassion, these challenges were not considered insurmountable. While acknowledging these as challenges, participants identified healthcare providers themselves, including their responses towards the identified challenges of compassion, as significant factors in this process-a novel finding from this study. This study provides insight into healthcare providers' perspectives on the notion of barriers and facilitators in the provision of compassion. RELEVANCE TO CLINICAL PRACTICE: This study provides a blueprint for optimising compassion on a personal, relational and system level.


Assuntos
Empatia , Pessoal de Saúde/psicologia , Cuidados Paliativos/psicologia , Qualidade da Assistência à Saúde/normas , Adulto , Canadá , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
6.
Support Care Cancer ; 25(10): 3209-3216, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28439727

RESUMO

PURPOSE: Women with breast cancer require information about their cancer and its treatment during the process of treatment decision-making, yet it is unclear if there are barriers to information support. This study explores the experience of making treatment decisions in breast cancer, paying particular attention to the barriers experienced to the provision of information. METHODS: Using a grounded theory methodology, semi-structured interviews were conducted with 22 women with invasive breast cancer exploring the experience of treatment decision-making. Data was organized using ATLAS.ti software and analyzed using constant comparisons. RESULTS: Analysis of the data showed that barriers to cancer and treatment information include intrapersonal and interpersonal communication challenges (emotional distress, patient-provider communication, "making it personal," access to information) which reside at different levels of the breast cancer experience (individual, dyad, group, organization). A model is provided to depict this experience. CONCLUSIONS: Women want information about their cancer and its treatment and experience barriers to information provision at various levels. Satisfactory information provision cannot occur without addressing barriers at every level. Utilizing interprofessional models of care may minimize existing barriers to information provision and empower patients to make satisfying treatment decisions that are consistent with their individual wishes.


Assuntos
Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Barreiras de Comunicação , Tomada de Decisões , Educação de Pacientes como Assunto , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/epidemiologia , Comunicação , Feminino , Humanos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/normas , Pesquisa Qualitativa
7.
Palliat Med ; 31(5): 437-447, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-27535319

RESUMO

BACKGROUND: Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and empathy. Studies comparing and contrasting patients' perspectives of sympathy, empathy, and compassion are largely absent. AIM: The aim of this study was to investigate advanced cancer patients' understandings, experiences, and preferences of "sympathy," "empathy," and "compassion" in order to develop conceptual clarity for future research and to inform clinical practice. DESIGN: Data were collected via semi-structured interviews and then independently analyzed by the research team using the three stages and principles of Straussian grounded theory. SETTING/PARTICIPANTS: Data were collected from 53 advanced cancer inpatients in a large urban hospital. RESULTS: Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand individual's suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful. CONCLUSION: Although sympathy, empathy, and compassion are used interchangeably and frequently conflated in healthcare literature, patients distinguish and experience them uniquely. Understanding patients' perspectives is important and can guide practice, policy reform, and future research.


Assuntos
Empatia , Pacientes Internados/psicologia , Neoplasias/enfermagem , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Teoria Fundamentada , Humanos , Pacientes Internados/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , População Urbana/estatística & dados numéricos
8.
BMC Med Educ ; 16: 169, 2016 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-27401015

RESUMO

BACKGROUND: The purpose of this qualitative study was to investigate advanced cancer patients' perspectives on the importance, feasibility, teaching methods, and issues associated with training healthcare providers in compassionate care. METHODS: This study utilized grounded theory, a qualitative research method, to develop an empirical understanding of compassion education rooted in direct patient reports. Audio-recorded semi-structured interviews were conducted to obtain an in-depth understanding of compassion training from the perspectives of hospitalized advanced cancer patients (n = 53). Data were analyzed in accordance with grounded theory to determine the key elements of the underlying theory. RESULTS: Three overarching categories and associated themes emerged from the data: compassion aptitude, cultivating compassion, and training methods. Participants spoke of compassion as an innate quality embedded in the character of learners prior to their healthcare training, which could be nurtured through experiential learning and reflective practices. Patients felt that the innate qualities that learners possessed at baseline were further fashioned by personal and practice experiences, and vocational motivators. Participants also provided recommendations for compassion training, including developing an interpersonal relationship with patients, seeing the patient as a person, and developing a human connection. Teaching methods that patients suggested in compassion training included patient-centered communication, self-reflection exercises, and compassionate role modeling. CONCLUSIONS: This study provides insight on compassion training for both current and future healthcare providers, from the perspectives of the end recipients of healthcare provider training - patients. Developing a theoretical base for patient centred, evidence-informed, compassion training is a crucial initial step toward the further development of this core healthcare competency.


Assuntos
Empatia , Pessoal de Saúde/educação , Pessoal de Saúde/psicologia , Pacientes Internados/psicologia , Neoplasias/psicologia , Satisfação do Paciente , Adulto , Atitude do Pessoal de Saúde , Feminino , Humanos , Relações Interpessoais , Entrevistas como Assunto , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Assistência Centrada no Paciente/normas , Pesquisa Qualitativa
9.
Death Stud ; 39(7): 411-21, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25674830

RESUMO

More effective psychosocial interventions that target uncomplicated bereavement are needed for those actively seeking support. The objective of this study was to assess the feasibility of evaluating a unique meaning-based group counseling (MBGC) intervention with a randomized controlled trial (RCT) design. Twenty-six bereft individuals were randomly assigned to either MBGC or a control bereavement support group. Twenty participants (11 experimental, nine control) completed all aspects of the study including self-report measures at baseline, postintervention, and 3-month follow-up of meaning in life, anxiety, depression, and grief. Results support the feasibility of an RCT with MBGC.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/métodos , Psicoterapia de Grupo/métodos , Luto , Aconselhamento/métodos , Estudos de Viabilidade , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Escalas de Graduação Psiquiátrica
10.
Palliat Support Care ; 13(5): 1381-90, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25655763

RESUMO

OBJECTIVE: Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life. METHOD: Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI-Couple Interview (PDI-CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI; (2) the patient's identified partner completed the PDI about how they thought the patient was feeling; and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion. RESULTS: Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving "permission to speak" with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were "on the same page," and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context. SIGNIFICANCE OF RESULTS: Participant couples' experiences of the PDI-CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger sample is recommended.


Assuntos
Cuidadores/psicologia , Terapia de Casal/métodos , Neoplasias/psicologia , Apoio Social , Cônjuges/psicologia , Estresse Psicológico/prevenção & controle , Doente Terminal/psicologia , Idoso , Institutos de Câncer , Comunicação , Feminino , Humanos , Relações Interpessoais , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , New South Wales , Pessoalidade , Projetos Piloto , Psicometria , Estresse Psicológico/etiologia , Inquéritos e Questionários
11.
Palliat Med ; 28(5): 448-58, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24311296

RESUMO

BACKGROUND: Dignity Therapy is a brief, psychosocial intervention for patients with incurable disease. AIM: To investigate participation in and evaluation of Dignity Therapy and longitudinal changes in patient-rated outcomes. DESIGN: A prospective (pre/post) evaluation design was employed. Evaluation questionnaires were completed when patients received the generativity document (T1) and 2 weeks later (T2). Changes from baseline (T0) were measured in sense of dignity, Structured Interview for Symptoms and Concerns items, Patient Dignity Inventory, Hospital Anxiety and Depression Scale and European Organisation for Research and Treatment of Cancer QLQ-C15-PAL (ClinicalTrials.gov number: NCT01507571). SETTING/PARTICIPANTS: Consecutive patients with incurable cancer, ≥18 years, informed of prognosis and not having cognitive impairment/physical limitations precluding participation were included at a hospice and a hospital palliative medicine unit. RESULTS: Over 2 years, 80 of 341 eligible patients completed Dignity Therapy. At T1, 55 patients completed evaluations, of whom 73%-89% found Dignity Therapy helpful, satisfactory and of help to relatives; 47%-56% reported that it heightened their sense of purpose, dignity and will to live. Quality of life decreased (mean = -9 (95% confidence interval: -14.54; -2.49)) and depression increased (mean = 0.31 (0.06; 0.57)) on one of several depression measures. At T2 (n = 31), sense of dignity (mean = -0.52 (-1.01; -0.02)) and sense of being a burden to others (mean = -0.26 (-0.49; -0.02)) improved. Patients with children and lower performance status, emotional functioning and quality of life were more likely to report benefit. CONCLUSIONS: This study adds to the growing body of evidence supporting Dignity Therapy as a valuable intervention in palliative care; a substantial subset of patients facing end of life found it manageable, relevant and beneficial.


Assuntos
Aconselhamento/métodos , Neoplasias/psicologia , Cuidados Paliativos , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Dinamarca , Depressão/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Pessoalidade , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários
12.
Cancer ; 119(9): 1706-13, 2013 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-23341092

RESUMO

BACKGROUND: Patients who are facing life-threatening and life-limiting cancer almost invariably experience psychological distress. Responding effectively requires therapeutic sensitivity and skill. In this study, we examined therapeutic effectiveness within the setting of cancer-related distress with the objective of understanding its constituent parts. METHODS: Seventy-eight experienced psychosocial oncology clinicians from 24 health care centers across Canada were invited to participate in 3 focus groups each. In total, 29 focus groups were held over 2 years, during which clinicians articulated the therapeutic factors deemed most helpful in mitigating patient psychosocial distress. The content of each focus group was summarized into major themes and was reviewed with participants to confirm their accuracy. Upon completion of the focus groups, workshops were held in various centers, eliciting participant feedback on an empirical model of therapeutic effectiveness based on the qualitative analysis of focus group data. RESULTS: Three primary, interrelated therapeutic domains emerged from the data, forming a model of optimal therapeutic effectiveness: 1) personal growth and self-care (domain A), 2) therapeutic approaches (domain B), and 3) creation of a safe space (domain C). Areas of domain overlap were identified and labeled accordingly: domain AB, therapeutic humility; domain BC, therapeutic pacing; and domain AC, therapeutic presence. CONCLUSIONS: This empirical model provides detailed insights regarding the elements and pedagogy of effective communication and psychosocial care for patients who are experiencing cancer-related distress.


Assuntos
Comunicação , Pesquisa Empírica , Relações Profissional-Paciente , Canadá , Institutos de Câncer , Feminino , Grupos Focais , Humanos , Masculino , Neoplasias/terapia , Recursos Humanos
13.
J Gerontol Nurs ; 38(10): 49-60, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22998093

RESUMO

With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs.


Assuntos
Luto , Família , Casas de Saúde , Satisfação do Paciente , Assistência Terminal , Casas de Saúde/organização & administração , Estudos Retrospectivos , Humanos
14.
Can J Nurs Res ; 43(3): 96-118, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21977728

RESUMO

Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. The aim of this study was to examine the factors associated with being treated with respect and kindness in the last month of life as an NH resident. A retrospective survey of 208 bereaved family members was conducted in 21 NHs located in a city in central Canada. The majority of participants indicated that the resident had always been treated with respect or kindness. However, significant differences emerged, with not all family members believing that their loved one had always been treated with respect or kindness. The apparent lapses in care practices are troubling and indicate that steps must be taken to address them.


Assuntos
Empatia , Pacientes Internados , Relações Enfermeiro-Paciente , Casas de Saúde , Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Recursos Humanos
15.
Front Psychiatry ; 12: 795813, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-35002810

RESUMO

Purpose: Dementia is the major cause for disability and dependence in older people and associated with considerable psychological burden. The aim of this study was to determine the feasibility, acceptability and preliminary efficacy of Dignity Therapy, a brief psychotherapeutic intervention to enhance dignity and reduce psychological burden, in patients with early stage dementia and in their families or close friends. Materials and methods: In this randomized, waitinglist-controlled clinical trial a total of 54 patients with new diagnosis of early stage dementia and 54 study partners (spouses: n = 37; relatives: n = 14; close friends: n = 3) were randomly assigned to immediate treatment (n = 28) or delayed treatment (n = 26) after 3 months waiting. The main outcomes were feasibility: proportion of screened and invited patients who consented participation; Acceptability: number of drop-outs, and satisfaction with treatment; Efficacy: psychological burden (Hospital Anxiety and Depression Scale-HADS), quality of life (WHOQOL-Bref), and sense of dignity (Patient Dignity Inventory-PDI). Results: In total 38.6% of all eligible patients (n = 140) consented and were enrolled. Along the study six participants (11.1%) dropped out. Patients' satisfaction with the treatment was high and with no significant difference between the groups. HADS scores were significantly lower in both groups at the 3-months follow-up (immediate group: mean difference = -2.69, SE = 0.85, P = 0.003; delayed group: mean difference = -1.97, SE = 0.89, P = 0.031). There was no significant group by time interaction effect (F = 0.71; df = 2, 70.3; P = 0.50). PDI scores only decreased significantly (i.e., improvement of dignity) in the immediate group (mean difference = -6.56, SE = 1.63, P < 0.001; delayed group: mean difference = -3.01, SE = 1.69, P = 0.081), but the group by time interaction effect was not statistically significant (F = 2.29; df = 1, 46.8; P = 0.14). Quality of life improved in some respects by the treatment, but the immediate and the delayed group did not differ significantly over time. After pooling patients' data of both groups, Dignity Therapy resulted in significant improvements in almost all outcome measures. Patients' family members/close friends reported high satisfaction with the intervention. Conclusions: Our findings suggest that Dignity Therapy is feasible and highly accepted in patients with early stage dementia. Patients reported significant improvements, however, there was no significant effect of the intervention in the immediate treatment group compared to the delayed group.

16.
J Palliat Med ; 24(8): 1174-1182, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33760658

RESUMO

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.


Assuntos
Neoplasias , Assistência Terminal , Idoso , Morte , Feminino , Humanos , Masculino , Neoplasias/terapia , Pacientes Ambulatoriais , Cuidados Paliativos
17.
Palliat Med ; 24(7): 715-23, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20605851

RESUMO

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included 'Family', 'Pleasure', 'Caring', 'A Sense of Accomplishment', 'True Friendship', and 'Rich Experience'. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians' efforts to enhance the dignity of terminally ill patients.


Assuntos
Neoplasias/psicologia , Cuidados Paliativos/psicologia , Pessoalidade , Qualidade de Vida/psicologia , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Austrália , Canadá , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Terminal/métodos
18.
BMC Palliat Care ; 9: 21, 2010 Sep 22.
Artigo em Inglês | MEDLINE | ID: mdl-20860786

RESUMO

BACKGROUND: 'Dignity Therapy' (DT) is a brief, flexible intervention, which allows patients to complete an interview and create a document regarding their life, identity and what they want to leave in writing for their loved ones. DT is based on the DT Question Protocol. Developed and tested in English speaking settings, DT has proven to be a feasible and effective way to enhance patient dignity, while diminishing suffering and depression. The aim of this study was to test the acceptability and feasibility of the DT Question Protocol among Danish health professionals and cancer patients, and to obtain preliminary estimates of patient uptake for DT. These results will be used to inform a larger evaluation study. METHOD: Ten professionals were interviewed about their perception of DT and the Question Protocol. It was then tested with 20 patients at two palliative care sites and one gynecologic oncology department. Data was analyzed using content analysis techniques to evaluate the protocol for relevance, acceptability and comprehension. The interest and relevance of the intervention was also determined by examining the preliminary participation rate. RESULTS: Overall, DT was perceived to be comprehensible and relevant. Professionals highlighted six concerns that might warrant modification. These issues were examined using patient data. Some of their concerns overlapped with those raised by the professionals (e.g. 'unacceptable self-praise' and 'interference with the lives of others'). Tailoring DT to Danish culture required easily accommodated adjustments to the procedures and the DT Question Protocol. Some concerns expressed by health professionals may have reflected protectiveness toward the patients. While the intervention was relevant and manageable for patients admitted to palliative care, DT was less easily implemented at the gynecologic oncology department. CONCLUSION: Based on patients' and professionals' reaction to the DT Question Protocol, and based on the preliminary proportion of participants accepting DT, the DT question protocol - with minor adaptations - appears to be a manageable, acceptable and relevant intervention for Danish patients admitted to palliative care.

19.
Palliat Support Care ; 8(1): 83-93, 2010 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-20163764

RESUMO

OBJECTIVE: To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elder's physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group. METHODS: Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed. RESULTS: Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spiritual well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer. SIGNIFICANCE OF RESULTS: Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.


Assuntos
Estadiamento de Neoplasias , Dor/epidemiologia , Dor/prevenção & controle , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Hospitais para Doentes Terminais , Humanos , Qualidade de Vida/psicologia
20.
Psychooncology ; 17(7): 660-7, 2008 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-18050260

RESUMO

PURPOSE: To determine the association between cancer diagnosis, mental disorders and suicidal behavior among community dwelling adults. METHODS: Data were drawn from the nationally representative Canadian Community Health Survey Cycle 1.2 (N=36 984, response rate 77%, age 15+). Respondents were grouped into three age groups (15-54, 55-74, and 75+ years), and multiple regression analyses were conducted to examine the relationship between cancer and mental disorders: unadjusted and adjusted for sociodemographics, social supports and other mental disorders. RESULTS: Among respondents aged 15-54, cancer was associated with increased odds of major depression (odds ratio [OR]=3.18; 95% confidence interval [CI]: 1.69-5.96), panic attacks (OR=2.15; 95% CI: 1.22-3.77) and any mental disorder. Among respondents aged 55-75, cancer was associated with increased odds of agoraphobia (OR=5.94; 95% CI: 1.68-21.03) and decreased odds of social phobia (OR=0.22; 95% CI: 0.06-0.80). Cancer was not associated with any mental disorder in the 75+ age group. Results persisted after adjustments for the covariates. Suicidal ideation was associated with cancer in the 55-74 age group (OR=5.07; 95% CI: 1.25-20.47) in unadjusted models; however, this relationship became non-significant when adjusting for the other covariates. CONCLUSION: Clinicians should consider screening for depression and panic disorder in young, community dwelling patients with cancer.


Assuntos
Transtornos Mentais/epidemiologia , Neoplasias/epidemiologia , Tentativa de Suicídio/estatística & dados numéricos , Adulto , Fatores Etários , Idoso , Agorafobia/diagnóstico , Agorafobia/epidemiologia , Agorafobia/psicologia , Comorbidade , Transtorno Depressivo Maior/diagnóstico , Transtorno Depressivo Maior/epidemiologia , Transtorno Depressivo Maior/psicologia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Programas de Rastreamento , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/psicologia , Transtorno de Pânico/diagnóstico , Transtorno de Pânico/epidemiologia , Transtorno de Pânico/psicologia , Transtornos Fóbicos/diagnóstico , Transtornos Fóbicos/epidemiologia , Transtornos Fóbicos/psicologia , Apoio Social , Fatores Socioeconômicos , Tentativa de Suicídio/psicologia
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