Palliative & Supportive Care最新文献

Objectives: To triangulate the perspectives of mental health clinicians, older people with mental illness and their carers on Advance Care Planning (ACP) to develop evidence-informed educational resources.

Methods: The study setting was public mental health services. Results of previously reported reflexive thematic analyses of interviews discussing ACP with three stakeholder groups (12 older people with mental illness, 5 carers, and 15 mental health clinicians) were triangulated. The emergent overarching themes were considered within an interpretive description framework to develop educational resources to support each of the three stakeholder groups to engage in ACP.

Results: Four overarching themes emerged: (i) importance of ACP recognized but ACP often not initiated; (ii) knowledge gaps; (iii) skill gaps - how to do it; and (iv) practical and process issues. Taking into account the research team's knowledge of the local health contexts, two formats of educational resources were developed; written information sheets bespoke to identified knowledge gaps and needs for each group, and brief training films for clinicians addressing need for practical skills in ACP. The consumer and carer sheets were translated into three languages. Two brief clinician training films demonstrated introducing ACP within mental health reviews and how to address aspects of complexity in ACP with older adults with a mental illness and carers.

Significance of results: The current absence of specific educational resources for ACP with older people with mental illness contrasts with the recognized importance of ACP. Written resources were created to address empirically identified knowledge gaps and misconceptions and provide practical information and training films developed to demonstrate key skills for clinicians. The resources were made freely available, with dissemination planned to promote and evaluate use as part of a more comprehensive educational intervention. Resources supporting clinician, consumer and carer education are an important first step towards empowerment and participation in ACP.

Objectives: Psychospiritual distress affects many patients with cancer, contributing to diminished quality of life, decreased survival and a desire for hastened death. The current standard of care, which primarily consists of antidepressants and psychotherapy, has demonstrated only modest benefits. Psilocybin-assisted therapy (PAT) has shown evidence of rapid, durable, and significant effects on measures of both depression and anxiety in this patient population.

Methods: A 51-year-old man diagnosed with metastatic lung cancer, referred to palliative care (PC) with a prognosis of less than 6 months, experienced depression and anxiety in the context of demoralization and existential distress. His suffering persisted despite psychotherapy and treatment with 100 mg of sertraline. He was granted access to PAT through Health Canada's Special Access Program (SAP) and was treated with 25 mg of oral psilocybin in a homecare setting, with preparative and integrative therapy prior to and following the PAT session.

Results: PAT was well tolerated, with significant decreases in both anxiety and depression. The patient subjectively reported a sustained reduction in suffering and improved well-being at 2 months post-intervention.

Significance of results: PAT, when utilized within an appropriate therapeutic framework, may be safely delivered at home and may serve as an effective and long-lasting treatment for symptoms of anxiety and depression associated with psychospiritual symptoms of existential distress in PC. Future studies should examine differences in outcomes between clinical and homecare settings for PAT, and could include creating practice guidelines and protocols for home-based PAT.

Objectives: Many factors are known to influence experiences in bereavement. With a growing focus on public health approaches to bereavement support, it is important to further understand factors which healthcare workers (HCW) can influence regarding bereavement experiences for families. The study aim was to describe the experience of people bereaved following a death in Sydney Local Health District (SLHD), with particular focus on people's awareness and experience of available supports and the perceived impact of healthcare interactions on bereavement experiences.

Methods: The study used semi-structured qualitative interviews (n = 15) to explore the experiences of bereaved people. These were recorded, transcribed, and analyzed using a Reflexive Thematic Analysis approach.

Results: Themes were generated showing the ways in which healthcare and bereavement experiences are mediated by personal interactions; that information and its delivery are central to shaping experiences; and the impacts of healthcare and government system issues on experiences of care and access to support. Attention to these factors may positively impact end-of-life care and subsequent bereavement experiences.

Significance of results: It is illuminating to consider the results in light of proposed public health approaches to bereavement. Our findings assist in understanding the role that HCWs have in supporting preparation for death, providing care with the potential to prevent negative bereavement outcomes, and offering short-term bereavement support. This is key in planning models that acknowledge the essential role HCWs play within public health approaches to bereavement support. Findings can inform education and training in healthcare, with a focus on approaches that affirm dignity and positive relationships, ensure sensitive and timely information provision, and enhance skilled communication. Recommendations can support policy and system improvements to enhance bereavement outcomes.

Objectives: This study aimed to translate, culturally adapt, and validate the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire for Colorectal Cancer for Serbian patients.

Methods: The prospective cohort study was conducted at the Clinic for Digestive Surgery, University Clinical Center of Serbia, and included 150 Serbian-speaking colorectal adenocarcinoma patients undergoing colorectal surgery. The translation process involved rigorous forward and backward translations, pilot testing with patients, and statistical analysis for psychometric validation, including internal consistency, reliability, convergent and discriminant validity, concurrent validity, and known-groups validity.

Results: Results showed good internal consistency across most scales (Cronbach's alpha values ranging from 0.769 to 0.855), with excellent split-half reliability (0.872). Convergent and discriminant validity analyses confirmed the questionnaire's capacity to measure constructs it was theoretically related. The significant correlations were observed between corresponding scales and items of EORTC QLQ-C30 and EORTC QLQ-CR29 questionnaires. Known-groups analysis demonstrated the tool's ability to distinguish between patient groups based on tumor location, stoma presence, and neoadjuvant therapy.

Significance of results: The Serbian version of the EORTC QLQ-CR29 is a reliable and valid instrument for assessing the quality of life in Serbian colorectal cancer patients, reflecting its potential for widespread clinical application.

Objective: The study was conducted to determine the relationship between spirituality and the quality of life among women with breast cancer.

Methods: This study utilized descriptive correlational research and a purposive sampling technique that involved women with breast cancer. Patients with breast cancer from particular breast cancer societies and organizations in Manila made up the sample. A total of 123 participants were included in the study. The Spiritual Index of Well-Being (SIWB) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire were used to collect the needed data. Descriptive and inferential statistics were used to determine the relationship between spirituality and quality of life among women with breast cancer.

Results: A high level of spirituality and quality of life were found among the participants. Overall, the mean score of the SIWB among the participants was 4.48 (±0.670), while the quality of life score was 62.6 (±10.9). A significant negative correlation was found between spirituality and quality of life (r = -0.127, p = 0.031), while significant positive correlations were noted between quality of life and self-efficacy (r = 0.683, p < 0.001) and life schemes or meaning in life (r = 0.704, p < 0.001).

Significance of results: Although spirituality and quality of life had a negative correlation, the subscales of self-efficacy and life scheme had high positive correlations, indicating the complex dimensions of spirituality. In addition to providing coping strategies, spirituality offers patients the emotional, social, and existential support they need to deal with the unknowns of illness.

Introduction: The LGBTQIA+ community faces pervasive discrimination, including in healthcare settings. This discrimination can be particularly detrimental during hospice and palliative care, where patients are especially vulnerable and may have distinct needs related to their sexual orientation or gender identity.

Objectives: This study aimed to identify the barriers and enablers to accessing equitable and inclusive palliative care for LGBTQIA+ individuals.

Methods: A self-administered online survey was conducted in November 2023 among LGBTQIA+ adults residing in Portugal. Thematic analysis was applied to identify barriers and enablers, mapped using an adapted socioecological framework.

Results: Fifty-five respondents participated, primarily cisgender women (49.1%) identifying as homosexual (50.9%), with most aged 18-34 (76.4%). Barriers included caregiver homophobia, lack of LGBTQIA+-specific knowledge among professionals, fear among patients, misaligned care priorities, exclusion of partners from decision-making, and limited access to care. Enablers involved professional LGBTQIA+-specific training, psychological support, integration of partners or chosen families in care, workforce diversity, dissemination of palliative care information, community engagement, and inclusive societal values.

Significance of results: Inclusive and responsive palliative care is essential to addressing the unique needs of LGBTQIA+ individuals. The findings highlight the need for systemic reforms to advance equity in care. The study calls for mandatory LGBTQIA+-focused training for healthcare providers, recognition of chosen families in care decisions, and public health campaigns that promote inclusivity. Collaboration with LGBTQIA+ organizations to improve outreach and access is vital, along with legislative measures to ensure equitable and inclusive care.

Aims: While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described.

Methods: Using literature and expert input, a survey was developed to elicit caregivers' perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living.

Results: A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents' responses.

Significance of results: Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions.

Objectives: End-of-life care in the Emergency Department (ED) can be a challenge. Defining goals of care in dementia patients may be more complex. The quality of ED medical records is relevant for better care in the last hours or days of life. In this article, we explore the identification of last days of life recognition in ED records of dementia patients.

Methods: Retrospective qualitative review of ED medical records of patients with dementia in the last 7 days of life using reflexive thematic analysis. This study was conducted at a university tertiary hospital, with a 24 h/7 days polyvalent ED. All 2021 ED medical records of dementia patients who presented to the ED within the last 7 days of their lives were included.

Results: More than 1 in 4 patient's medical records (n = 55, 27,4%) made no explicit reference to the identification of last days of life and only 2 medical records contained this specific designation. Most relevant issues presented under three broader themes: (I) diagnosis and prognosis concerning the last days or hours of life; (II) goals of care, medical decisions and communication about care in the last days or hours of life; and (III) comfort and needs assessment in the last days of life of patients with dementia in the ED.

Significance of results: There is limited identification of the last days or hours of life in ED medical records and clinical notes are of poor-quality regarding communication and shared decision making.