Palliative & Supportive Care最新文献

Objectives: While caring for seriously ill children is a rewarding experience, pediatric healthcare providers may experience sadness and emotional distress when their patient dies. These feelings, particularly when not addressed, can lead to negative health and occupational outcomes. Remembrance practices can provide a safe space for staff to process their grief. This study explored pediatric healthcare providers' perceptions of an annual Pediatric Remembrance Ceremony (PRC) and a quarterly program, Good Grief and Chocolate at Noon (GGCN), to learn what components of the programs were considered meaningful and the personal impact on those who attended. The programs pivoted to a virtual platform during the COVID-19 pandemic, and the study also assessed providers' perspectives of attending the programs virtually.

Methods: A 19 multiple choice survey instrument was designed, reviewed, piloted, revised, and re-piloted by an interdisciplinary bereavement committee prior to administration. The survey included 2 open-ended questions, inviting additional insights into personal impact and future directions for remembrance programs. The survey was administered on an encrypted online platform.

Results: Components of the PRC respondents most valued included the opportunity for staff to choose a name of a patient they cared for and to light a candle for that patient as their name is read. Those who participated in GGCN found story sharing helpful, along with having a speaker address a topic around loss and grief during the second half of the session. Both programs provided reflection, solidarity, and memorialization. Most respondents prefer having both in-person and virtual options.

Significance of results: Healthcare providers are affected by the death of the children they care for and value opportunities provided to join colleagues in remembering their patients. The findings underscore the value of remembrance programs in supporting bereaved staff.

Objectives: This case highlights the limitations of current prognostication and communication in clinical practice.

Methods: We report a case of a 50 year old patient with metastatic melanoma following admission to intensive care unit and later transferred to palliative care unit for end-of-life care.

Results: The patient had clinical improvement despite signs of predictors of death and was later transferred back to care of oncology team.

Significance of results: Physicians frequently overestimate or underestimate survival time which can be distressing to patients and families. There is need for further research to improve the accuracy of these tools for the sake of our patients and their families.

Background: Prolonged grief is a chronic and debilitating condition that affects millions of persons worldwide. The aim of this study was to use a qualitative approach to better understand how relatives with prolonged grief disorder perceive what does or not help them and whether they were able to make recommendations.

Methods: Participants were all relatives of deceased patients admitted to 26 palliative care units involved in the FamiLife study; relatives were included if diagnosed with prolonged grief symptoms (i.e., Inventory Complicated Grief (ICG) questionnaire with a cut-off >25), and volunteered to participate. Semi-directed telephone interviews were conducted by psychologists between 6 and 12 months after the patient's death. The interviews were open-ended, without a pre-established grid, then transcribed and analyzed using a thematic approach.

Results: Overall, 199/608 (32.7%) relatives were diagnosed with prolonged grief symptoms, i.e., with an ICG score >25, and 39/199 (20%) agreed to be interviewed. The analysis yielded 4 themes: (1) the experience of mourning: intense sadness and guilt (reported by 35/39 participants, 90%); (2) aggravating factors (38/39, 97%): feeling unprepared for death and loneliness, presence of interpersonal barriers to adjustment, external elements hindering the mourning progress; (3) facilitating factors (39/39, 100%): having inner strength or forcing oneself to get better, availability of social and emotional support; and (4) the suggestions grieving relatives had to alleviate the grief burden (36/39, 92%). The analysis enabled to identify 5 suggestions for relieving the grief burden: improving communication, developing education about death and grief, maintaining contact, offering psychological support, and choosing the right time for the palliative care team to contact the relatives.

Conclusions: This study revealed how bereaved relatives experienced the help provided by the healthcare teams, their representations, and what could be improved. These findings could be used to design intervention studies.

Objectives: Coping styles can be improved by dyadic palliative care interventions and may alleviate patients' and family caregivers' distress. Moreover, family caregivers' preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.

Methods: A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor-Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.

Results: Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman's ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = -0.38), self-blame (ρ = -0.27), and denial (ρ = -0.14) was found to be associated with less resilience.

Significance of results: By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers' resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

Objectives: Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients' life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity.

Methods: We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55-88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact.

Results: Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact.

Significance of results: Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.

Objectives: Compassion is acknowledged as a key component of high-quality palliative care, producing positive outcomes for both patients and healthcare providers. The development of the Sinclair Compassion Questionnaire (SCQ) fulfilled the need for a valid and reliable tool to measure patients' experience of compassion. To validate the Italian version of the SCQ and to evaluate its psychometric properties in a sample of cancer patients with a life expectancy of less than 4 months.

Methods: Cronbach's alpha estimates were computed to evaluate the internal reliability. Exploratory Factor Analysis, Confirmatory Factor Analysis, and Item Response Theory analyses were performed to assess the validity of the construct. Divergent validity was assessed using the Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-Patient Satisfaction, the revised Edmonton Symptom Assessment Scale, and the Trust in Oncologist Scale-Short Form. Data were collected from 131 patients recruited in either a hospital or a hospice setting.

Results: The analyses confirmed the single factor structure of SCQit, with Confirmatory Factor Analysis factor loadings ranging between 0.81 and 0.92 and satisfactory internal reliability. Hospital setting and high diagnosis/prognosis awareness were associated with significantly lower SCQit scores, whereas practicing a religious faith was associated with greater experiences of compassion.

Significance of results: The Italian version of the SCQ (SCit) is a valid and reliable measure of patient-reported compassion. The SCQit can be used in clinical practice and research to measure the compassion experiences of terminally ill cancer patients and to evaluate the effectiveness of training to promote compassionate care in healthcare professionals.

Objectives: Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context.

Methods: Using Beaton's methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil.

Results: The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant's interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality.

Significance of results: This validation study will be significant for future DT research from the caregivers' perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.