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1.
Artigo em Espanhol, Português | LILACS | ID: biblio-1553401

RESUMO

INTRODUÇÃO: A psicoterapia breve tem sido um importante recurso no atendimento aos casos de luto relacionados à perda de um familiar, de modo que estudos têm evidenciado a necessidade de aprofundamento nesta modalidade de atendimento. OBJETIVO: Este artigo tem como objetivo a apresentação e discussão de um relato de experiência de atendimento em psicoterapia breve a partir da Abordagem Centrada na Pessoa (ACP) e tem como tema central o processo de luto. METODOLOGIA: O relato de experiência se referiu a um processo de atendimento psicoterápico que ocorreu através do Projeto de Acolhimento da Universidade Federal da Bahia, entre setembro e dezembro de 2022, totalizando 10 encontros, sendo uma sessão semanal com duração de 50 minutos cada. Os atendimentos foram realizados remotamente. Através do relato de experiência, este trabalho buscou compreender o processo de luto de um familiar sob a luz do Modelo do Processo Dual do Luto, analisando a experiência da psicóloga no processo psicoterápico breve. RESULTADOS: Como resultados principais, observou-se que o processo de luto é um fenômeno natural e complexo e deve ser compreendido dentro das particularidades contextuais e culturais de cada indivíduo/família. CONCLUSÃO: Concluiu-se pontuando a importância da temática do luto na formação dos profissionais de saúde, em especial daqueles que lidam com essa demanda na sua prática profissional.


INTRODUCTION: Brief psychotherapy has been an important resource in the care of bereavement cases related to the loss of a family member, thus studies have shown the need to deepen this modality of care OBJECTIVE: This article aims to present and discuss an experience report of brief psychotherapy care from the person-centered approach, which has as its central theme the grieving process. METHODOLOGY: The experience report referred to a psychotherapeutic service that took place through the Projeto de Acolhimento da Universidade Federal da Bahia, between September and December 2022, totaling 10 meetings, with a weekly session lasting 50 minutes each. The consultations were carried out remotely. Through an experience report, this paper sought to understand the grieving process of a family member under the Dual Grief Process Model, analyzing the psychologist's experience in the brief psychotherapeutic process. RESULTS: As the main results, the study observed that the grieving process is a natural and complex phenomenon. In this sense, the necessary study points to understanding the grieving process within the contextual and cultural particularities of each individual/family. CONCLUSION: It was concluded by pointing out the importance of the theme of mourning in the training of health professionals, especially those who deal with this demand in their professional practice.


INTRODUCCIÓN: La psicoterapia breve ha sido un recurso importante en la atención de casos de duelo relacionados con la pérdida de un familiar, por lo que los estudios han mostrado la necesidad de profundizar en esta modalidad de atención. OBJETIVO: Este artículo tiene como objetivo presentar y discutir un relato de experiencia de atención psicoterapéutica breve desde el enfoque centrado en la persona, que tiene como tema central el proceso de duelo. METODOLOGÍA: El informe de la experiencia se refirió a un servicio psicoterapéutico que tuvo lugar a través del Projeto de Acolhimento da Universidade Federal da Bahia, entre septiembre y diciembre de 2022, con un total de 10 reuniones, con una sesión semanal de 50 minutos cada una. Las consultas se realizaron a distancia. A través del relato de la experiencia, este trabajo trató de comprender el proceso de duelo de un familiar a la luz del Modelo Dual de Proceso de Duelo, analizando la experiencia de la psicóloga en el proceso psicoterapéutico breve. RESULTADOS: Como principales resultados, se concluyó que el proceso de duelo es necesario, delicado y debe ser comprendido dentro de las particularidades contextuales y culturales de cada individuo/familia. CONCLUSIÓN: Se concluyó señalando la importancia del tema del duelo en la formación de los profesionales de la salud, especialmente de aquellos que atienden esta demanda en su práctica profesional.


Assuntos
Psicoterapia , Luto , Psicoterapia Centrada na Pessoa
2.
Support Care Cancer ; 32(4): 214, 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38446248

RESUMO

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.


Assuntos
Luto , Neoplasias , Humanos , Estudos Prospectivos , Pesar , Comunicação
3.
Palliat Med ; 38(3): 389-395, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38506273

RESUMO

BACKGROUND: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. AIM: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. DESIGN: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. DATA SOURCES: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998-May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. RESULTS: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. CONCLUSIONS: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.


Assuntos
Luto , Pesar , Humanos , Criança , Pais , Cuidados Paliativos
4.
PLoS One ; 19(3): e0300291, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38489290

RESUMO

BACKGROUND: Recent research identified that cancer bereavement can lead to post-traumatic growth (PTG). Although PTG and its correlates are well explored in cancer patients and survivors, persons bereaved from cancer have received scant attention. Therefore, the present review attempts to identify the correlates of PTG among persons bereaved from cancer. METHODS: A systematic search in PubMed, Web of Science, APA PsycNet, Science Direct, Scopus, and Wiley was conducted to identify quantitative studies published in English, resulting in 12 eligible reports being included in the final analysis. JBI critical checklists were employed to appraise the risk of bias. RESULTS: The review identified 17 correlates, which were classified into four categories: demographic factors (age, gender, religious status, level of education), loss-related factors (time since death, quality of death, prolonged grief symptoms), interpersonal factors (relationship to the deceased, social support, attachment style, bereavement behaviours) and intrapersonal factors (resilience, coping, rumination, benevolence, meaningfulness, self-worth). Random effects meta-analyses on six correlates revealed correlation coefficients of age = -0.02 (95% CI: -0.35-0.31), gender = 0.27 (95% CI: 0.08-0.45), time since death = 0.09 (95% CI: -0.02-0.20), quality of death = 0.29 (95% CI: -0.01-0.54), prolonged grief symptoms = 0.22 (95% CI: 0.08-0.35) and relationship to the deceased = 0.13 (95% CI: -0.03-0.29). Fixed effects meta-analysis was performed for social support (r = 0.13, 95% CI: 0.04-0.21). However, PTG was found to be significantly associated with gender, prolonged grief symptoms, and social support. CONCLUSIONS: Very few studies examined PTG among persons bereaved from cancer, highlighting the need for increased attention, understanding, and conceptualisation of PTG in the population.


Assuntos
Luto , Neoplasias , Crescimento Psicológico Pós-Traumático , Humanos , Recém-Nascido , Adaptação Psicológica , Pesar
5.
BMC Palliat Care ; 23(1): 55, 2024 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-38408966

RESUMO

BACKGROUND: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). METHODS: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. RESULTS: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. CONCLUSIONS: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. SYSTEMATIC REVIEW PRE-REGISTRATION: PROSPERO [CRD42021244859].


Assuntos
Luto , Musicoterapia , Adulto , Humanos , Qualidade de Vida/psicologia , Cuidadores/psicologia , Pesar
6.
BMC Palliat Care ; 23(1): 33, 2024 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-38326820

RESUMO

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.


Assuntos
Luto , Musicoterapia , Humanos , Cuidadores , Doente Terminal , Pesar , Cuidados Paliativos
7.
BMC Health Serv Res ; 24(1): 155, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38303007

RESUMO

BACKGROUND: Losing a close other to cancer is an incisive experience that occurs after a long course of illness and intense family caregiving. Despite an evident need for family engagement and support and guidance on this, patients and family members may not receive the attention and support they need when a family unit is experiencing a disruption by death. A clear understanding of the quality of care that is currently provided and its ability to address family needs is necessary to improve end-of-life and bereavement support to families affected by cancer. The purpose of this study is to investigate the quality of support of end-of-life and bereavement care to families, their (un)met needs, grief experiences, and self-perceived health outcomes. METHODS: A multi-center, cross-sectional observational survey study with family members (n = 35) whose close other died of cancer in a health institution or their own home in German-speaking Switzerland. RESULTS: Bereaved family members were mostly satisfied with end-of-life care. Information on the grief process and services, and acknowledgment of their grief was experienced as helpful. Most coped with their grief drawing on family resources and exhibited resilience, but they reported unmet needs in relation to family togetherness and caregiving. CONCLUSION: This study with a small number of family members indicates that support provided to families across settings and illness trajectories is perceived as helpful, with specific needs related to family support. The findings suggest that improvements should focus on ensuring care that addresses the family as a unit and enables togetherness, mutual reflection, meaningful relationships, preparedness for death, resilience, and benefit-finding. PROTOCOL REGISTRATION: https://osf.io/j4kfh .


Assuntos
Luto , Neoplasias , Assistência Terminal , Humanos , Estudos Transversais , Morte , Família , Neoplasias/terapia
8.
J Pediatr Nurs ; 75: 187-195, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38163422

RESUMO

PURPOSE: This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. DESIGN AND METHODS: This cross-sectional study involved 26 parents recruited from three pediatric hematology-oncology wards in Israel who completed demographic and medical questionnaires of the child, and a parental needs questionnaire based on The Needs Assessment of Family Caregivers-Cancer questionnaire, following the death of their child. FINDINGS: Parents expressed needs related to medical care, including pain management, decision-making, and finding optimal treatment options for their children. The most prominent unmet needs were financial and psychological factors, of which, paying for medical expenses and helping their child adjust to the end of their life received the highest mean scores. There were notable gaps between desired and actual support from service providers, particularly in relation to emotional aspects. While over half of the parents believed the psychosocial team should assist with their child's emotional distress, this need was not adequately fulfilled. Some parents also expressed a desire for better emotional support during the end-of-life period. CONCLUSIONS: The study emphasizes the importance of understanding parents' needs and perspectives during this challenging time. The identified gaps in support can be attributed to parental roles, the struggle with losing hope, communication barriers between care teams and parents, among others. PRACTICE IMPLICATIONS: By gaining insight into these needs and perceptions, care teams can enhance the provision of palliative care and optimize the distribution of responsibilities within the team.


Assuntos
Luto , Neoplasias , Assistência Terminal , Criança , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Pais/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Morte
9.
J Gen Intern Med ; 39(6): 893-901, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38240917

RESUMO

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.


Assuntos
Luto , Cuidados Paliativos , Qualidade da Assistência à Saúde , Assistência Terminal , Humanos , Cuidados Paliativos/normas , Masculino , Idoso , Feminino , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Assistência Terminal/normas , Pacientes Internados , Estudos de Coortes , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Estados Unidos , Hospitalização/estatística & dados numéricos
10.
BMC Palliat Care ; 23(1): 14, 2024 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-38212776

RESUMO

BACKGROUND: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. METHODS: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker's appraisal tool. A narrative synthesis approach using Popay's work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members' bereavement experiences were included. We excluded papers studying bereavement through the death of a child. RESULTS: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. CONCLUSION: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research.


Assuntos
Luto , Família , Criança , Humanos , Família/psicologia , Pesar , Cuidados Paliativos/psicologia , População do Leste Asiático
11.
Psychooncology ; 33(1): e6276, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38282233

RESUMO

OBJECTIVES: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.


Assuntos
Luto , Neoplasias , Assistência Terminal , Humanos , Pesar , Cuidados Paliativos , Neoplasias/terapia , Neoplasias/psicologia , Morte
12.
Cancer ; 130(7): 1171-1182, 2024 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-38009953

RESUMO

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.


Assuntos
Luto , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Tutoria , Neoplasias , Feminino , Humanos , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/terapia
13.
J Pain Symptom Manage ; 67(2): 147-156, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37972719

RESUMO

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.


Assuntos
Luto , COVID-19 , Adulto , Humanos , Cuidados Paliativos , Pandemias , Estudos Transversais , Austrália/epidemiologia , Pesar , Família , Hospitais , Morte
14.
Death Stud ; 48(4): 371-382, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37463272

RESUMO

An online cross-sectional survey was performed among 181 nurses in mainland China who experienced their most recent patient death within the last month. Multivariate linear regressions were used following bivariate analysis to identify influencing factors for their short-term professional bereavement reactions. More intensive reactions were associated with the nurse's fewer experiences of patient death; the nurse's employment in the intensive care unit rather than the emergency, oncology, geriatrics, or internal medicine departments; and the patient experiencing more pain in the last few days. Higher reaction scores were also reported by nurses who lost the patient more than 1 week prior.


Assuntos
Luto , Enfermeiras e Enfermeiros , Humanos , Papel do Profissional de Enfermagem , Estudos Transversais , Pesar , China , Inquéritos e Questionários
15.
J Clin Nurs ; 33(2): 630-641, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37807635

RESUMO

OBJECTIVES: Taking a dimensional view, this study aims to understand, among professional caregivers after patient deaths, the symptom distribution and development of the short-term bereavement reaction (SBR) network and the node-level links between the meaning of patient death (MPD) and the SBR network. METHODS: A cross-sectional secondary analysis was conducted with existing data from 220 Chinese urban hospital nurses and physicians who experienced the most recent patient death within a month. MPD was measured by the 10 formative items of the meaning of patient death model, and SBR was measured by the Short-term Bereavement Reactions Subscale of the Professional Bereavement Scale. Both Gaussian graphical network analysis and Bayesian network analysis were applied to the SBR network, and Gaussian graphical network analysis was used to estimate the MPD-SBR network. RESULTS: Frustrated and guilty are central nodes in the regularized partial correlation SBR network. Meanwhile, a traumatic event and failure at work are important bridge nodes between the MPD network and the SBR network. In the Bayesian SBR network, moved by the family's understanding, moved by the family's gratitude and sad mainly drive other nodes. CONCLUSION: After a patient death, nurses' and physicians' SBR networks feature professional-dimension symptoms at their core, while they follow 'personal to professional' and 'concrete to abstract' symptom development patterns. The personal meaning of a traumatic event and the professional meaning of a failure at work play key roles in bridging the MPD and SBR networks, and meanings of both the personal and the professional dimensions can link to professional-dimension reactions. REPORTING METHOD: The manuscript followed the STROBE checklist for reporting cross-sectional studies. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Assuntos
Luto , Médicos , Humanos , Teorema de Bayes , Estudos Transversais , Pesar
16.
J Pain Symptom Manage ; 67(3): 223-232.e2, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38036113

RESUMO

CONTEXT/OBJECTIVES: The scarce research on factors associated with surrogate decisional regret overlooks longitudinal, heterogenous decisional-regret experiences and fractionally examines factors from the three decision-process framework stages: decision antecedents, decision-making process, and decision outcomes. This study aimed to fill these knowledge gaps by focusing on factors modifiable by high-quality end-of-life (EOL) care. METHODS: This observational study used a prior cohort of 377 family surrogates of terminal-cancer patients to examine factors associated with their membership in the four preidentified distinct decisional-regret trajectories: resilient, delayed-recovery, late-emerging, and increasing-prolonged trajectories from EOL-care decision making through the first two bereavement years by multinomial logistic regression modeling using the resilient trajectory as reference. RESULTS: Decision antecedent factors: Financial sufficiency and heavier caregiving burden increased odds for the delayed-recovery trajectory. Spousal loss, higher perceived social support during an EOL-care decision, and more postloss depressive symptoms increased odds for the late-emerging trajectory. More pre- and postloss depressive symptoms increased odds for the increasing-prolonged trajectory. Decision-making process factors: Making an anticancer treatment decision and higher decision conflict increased odds for the delayed-recovery and increasing-prolonged trajectories. Making a life-sustaining-treatment decision increased membership in the three more profound trajectories. Decision outcome factors: Greater surrogate appraisal of quality of dying and death lowered odds for the three more profound trajectories. Patient receipt of anticancer or life-sustaining treatments increased odds for the late-emerging trajectory. CONCLUSION: Surrogate membership in decisional-regret trajectories was associated with decision antecedent, decision-making process, and decision outcome factors. Effective interventions should target identified modifiable factors to address surrogate decisional regret.


Assuntos
Luto , Assistência Terminal , Humanos , Tomada de Decisões , Conflito Psicológico , Emoções , Pesar
17.
J Hosp Palliat Nurs ; 26(2): E74-E82, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-37962185

RESUMO

Pediatric palliative care was introduced in South Korea in 2018, with an increased need for care of children with life-limiting conditions, such as leukemia. However, the perspective of parents, who are the primary caregivers, regarding pediatric palliative care has not been explored. This study aimed to describe the pediatric palliative care-related experiences of parents who had lost a child to leukemia to better understand their needs and care outcomes. Ten mothers of children who received pediatric palliative care were recruited. Individual in-depth interviews were conducted. Phenomenology was applied to elucidate parents' experiences during their children's illness and after bereavement. From 179 main statements and 46 meaningful units, 22 themes were derived and grouped into 11 theme clusters and 4 categories. The participants described that the pediatric palliative care team had an indispensable role in providing emotional support to them and their children; this support continued even after the child's death. In addition, the participants were satisfied with their choice to receive pediatric palliative care and hoped that more regions could benefit from the services. The study findings could contribute to advances and the popularization of pediatric palliative care in South Korea.


Assuntos
Luto , Leucemia , Feminino , Criança , Humanos , Cuidados Paliativos/psicologia , Pais/psicologia , República da Coreia
18.
J Adolesc Young Adult Oncol ; 13(2): 281-287, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37870751

RESUMO

Purpose: There is limited research addressing the bereavement needs of parents whose young adult (YA) children have died from cancer. Research within oncology about the impact of child loss has tended to focus on parents of pediatric aged children. We adapted a general bereavement support group curriculum used with adults to address the unique needs of bereaved parents of YAs. Methods: Using a quality improvement framework, 25 bereaved parents of YA children participated in one of three 6-session bereavement support group programs during 2020 and 2021. Due to the coronavirus disease 2019 (COVID-19) pandemic, the programs were offered virtually. The participants provided feedback and completed an evaluation. Results: Nineteen mothers and six fathers participated with 20 (80%) completing the evaluation. The median time since the death of their child was 6 months. The participants evaluated the program highly, reporting that they felt less isolated (4.25/5 on a 5-point Likert scale); that their concerns were similar to others (4.45/5); and the discussion topics were relevant (4.20/5). Other topics that were identified included the impact on the family of losing a YA child, and how other relationships change. Forty-five percent of participants expressed a preference for a hybrid delivery model, incorporating in-person and virtual sessions. The majority also wished to continue meeting monthly, given they had little contact with other bereaved parents of YAs. Conclusion: The general bereavement support group curriculum was readily adapted for use with bereaved parents of YA children who died from cancer. A hybrid delivery model was the preferred method for future groups.


Assuntos
Luto , Neoplasias , Adulto Jovem , Humanos , Criança , Idoso , Filhos Adultos , Grupos de Autoajuda , Pais
19.
Rev. latinoam. enferm. (Online) ; 31: e4010, Jan.-Dec. 2023. tab
Artigo em Espanhol | LILACS, BDENF | ID: biblio-1515336

RESUMO

Objetivo: examinar la continuidad de vínculos interna y externa en hombres que experiencian duelo por un ser querido. Método: estudio correlacional, descriptivo y transversal. Muestra a conveniencia de 170 hombres dolientes. Las variables fueron mediadores del duelo, continuidad de vínculos y datos sociodemográficos. Se utilizó un cuestionario en línea compuesto por mediadores de duelo, escala de continuidad de vínculos y datos sociodemográficos. Se empleó estadística descriptiva, análisis de varianza y coeficiente de Spearman. El nivel de significancia correspondió a p<0,05. Resultados: la media de edad de los participantes fue de 36,61 años (DE=13,40), y el 80,00% tenía educación superior. Los valores medios de continuidad de vínculos interna y externa fueron 24,85 (DE=7,93) y 7,68 (DE=2,33), respectivamente. Se establecieron diferencias significativas referentes a la continuidad de vínculos interna y externa entre parentesco de la persona fallecida (p<0,001), y ninguna con la causa de muerte o con el tiempo transcurrido desde el fallecimiento. No se precisaron correlaciones significativas entre continuidad de vínculos interna/externa y mediadores del duelo. Conclusión: los hombres dolientes expresan la continuidad de vínculos interna de manera frecuente y la externa en ocasiones, con diferencias respecto a quién era la persona fallecida. La Enfermería podría diseñar estrategias específicas que fortalezcan el afrontamiento del duelo en este grupo.


Objective: to examine internalized and externalized continuing bonds in men grieving a loved one. Method: a correlational, descriptive and cross-sectional study. Convenience sample comprised by 170 mourning men. The variables were mediators of mourning, continuing bonds and sociodemographic data. The instrument used was an online questionnaire comprised by mediators of mourning, a continuing bonds scale and sociodemographic data. Descriptive statistics, analysis of variance and Spearman's coefficient were used. The significance level adopted was p<0.05. Results: the participants' mean age was 36.61 years old (SD=13.40), and 80.00% had Higher Education. The mean values corresponding to internalized and externalized continuing bonds were 24.85 (SD=7.93) and 7.68 (SD=2.33), respectively. Significant differences were established referring to internalized and externalized continuing bonds in terms of kinship with the deceased person (p<0.001), and none with the cause of death or with the time elapsed since the event. No significant correlations were defined between internalized/externalized continuing bonds and mediators of mourning. Conclusion: grieving men express internalized and externalized continuing bonds frequently and occasionally, respectively, with differences according to who the deceased person was. The Nursing discipline might devise specific strategies that strengthen coping with grief in this population group.


Objetivo: examinar a manutenção de vínculos interna e externa em homens vivenciando o luto por um ser querido. Método: estudo correlacional, descritivo e de corte transversal. Amostra de conveniência de 170 homens em luto. As variáveis foram: mediadores do luto, manutenção de vínculos e dados sociodemográficos. Utilizou-se um questionário online composto por mediadores de luto, escala de manutenção de vínculos e dados sociodemográficos. Empregou-se estatística descritiva, análise de variância e coeficiente de Spearman. Nível de significância p<0,05. Resultados: os participantes tinham uma média de idade de 36,61 anos (DP=13,40) e 80,00% tinham ensino superior. A média de manutenção interna dos vínculos foi de 24,85 (DP=7,93) e a de manutenção externa foi de 7,68 (DP=2,33). Foram estabelecidas diferenças significativas para a manutenção dos vínculos internos e externos entre os parentes do falecido (p<0,001), nenhuma com a causa da morte ou o tempo decorrido desde a morte. Não foram encontradas correlações significativas entre a manutenção dos vínculos internos e externos e os mediadores do luto. Conclusão: os homens em luto expressaram a manutenção interna dos vínculos com frequência e a manutenção externa dos vínculos ocasionalmente, com diferenças a respeito de quem era a pessoa falecida. A enfermagem poderia criar estratégias específicas para fortalecer o enfrentamento do luto nesse grupo.


Assuntos
Humanos , Masculino , Adulto , Luto , Adaptação Psicológica , Pesar , Estudos Transversais , Apego ao Objeto
20.
Psicol. rev ; 32(2): 459-484, 31/12/2023.
Artigo em Português | LILACS, INDEXPSI | ID: biblio-1552655

RESUMO

A polícia brasileira já foi considerada a mais letal e frequentemente alveja jovens negros marginalizados (Araújo, 2015). As mães desses indivíduos perdem seus filhos precocemente de maneira abrupta e violenta. Para muitas mães a perda de um filho constitui a maior do mundo, o que torna relevante questionar: como a perda de um filho pela violência policial repercute no enlutamento materno? Foram encontrados poucos estudos sobre o tema, apesar de sua prevalência e dos impactos negativos permanentes na vida dessas mães (Gomes, 2019). Por meio de uma revisão bibliográfica não sistemática sobre o tema do luto e das perdas violentas, e com base em depoimentos publicizados de mães que perderam seus filhos pela violência policial, focalizamos como a psicanálise tem um importante papel na escuta dessas mulheres, que podem traçar diferentes caminhos de trabalho psíquico. Como resultado, vimos que a perda de um filho possui caráter traumático e nela se destaca a natureza narcísica da relação mãe-filho, rompida abruptamente pela morte. Este estudo oferece algumas contribuições para o entendimento desse sofrimento e para a escuta dessas mulheres, que, como muitas se autodenominam, são "mães sem nome". (AU)


Brazilian police were once considered the most lethal and often target marginalized young black men (Araújo, 2015). The mothers of these individuals lose their children early in an abrupt and violent manner. To many mothers, the loss of a child is the biggest one in the world, which makes it relevant to ask: How does the loss of a child to police violence affect maternal mourning? Few studies have been found on the topic, despite its prevalence and the permanent negative impacts on the lives of these mothers (Gomes, 2019). Through a non-systematic literature review on the theme of grief and violent loss, and based on publicized testimonials of mothers who have lost their children to police violence, we focused on how psychoanalysis has an important role in listening to these women, who can trace different paths of psychic work. As a result, we concluded that the loss of a child has a traumatic issue, and the narcissistic nature of the mother-child relationship, abruptly broken by death, stands out. This study offers some contributions to the understanding of this suffering and to the listening of these women, who, as many call themselves, "mothers without a name". (AU)


La policía brasileña fue considerada la más letal y frecuentemente ataca a los jóvenes negros marginados (Araújo, 2015). Las madres de estas personas pierden a sus hijos tempranamente de forma abrupta y violenta. Para muchas madres, la pérdida de un hijo es la mayor del mundo, lo que hace pertinente preguntarse: ¿cómo la pérdida de un hijo por la violencia policial afecta al duelo materno? Se encontraron pocos estudios sobre este tema, a pesar de su prevalencia y de los impactos negativos permanentes en la vida de estas madres (Gomes, 2019). Mediante una revisión bibliográfica no sistemática sobre el tema del duelo y de las pérdidas violentas, y a partir de testimonios difundidos de madres que perdieron a sus hijos por la violencia policial, nos centramos en cómo el psicoanálisis tiene un papel importante en la escucha de estas mujeres, que pueden trazar diferentes caminos de trabajo psíquico. Como resultado, vimos que la pérdida de un hijo tiene carácter traumático y destaca la naturaleza narcisista de la relación madre-hijo, rota abruptamente por la muerte. Este estudio ofrece algunas contribuciones a la comprensión de este sufrimiento y a la escucha de estas mujeres que, como muchas se autode-nominan, son "madres sin nombre". (AU)


Assuntos
Humanos , Feminino , Psicanálise , Luto , Mães/psicologia , Violência , Brasil , Polícia , Racismo , Narcisismo
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