Palliative & Supportive Care最新文献

Objective: Perinatal palliative care (PPC) offers holistic support to families of babies with life-limiting conditions, addressing emotional, psychological, and practical needs alongside ensuring dignity for the baby. While there is growing evidence to support its benefits, there remains inconsistent service provision, limited integration with maternity care, and regional disparities. This study explores parental experiences with perinatal hospice services to inform future care models.

Methods: The study was undertaken in the Northwest of England. Fourteen semi-structured interviews were undertaken with 17 parents (three joint interviews) who had experienced perinatal loss and had engaged with PPC services. Semi-structured interviews were used to gather insights into their perceptions of care they received, focusing on issues such as communication, the timing of referrals, and the emotional and practical support provided. Data was analyzed using a thematic analysis approach.

Ethical approval: The obtained REC reference: 22/YH/0028 Results Five key themes were identified: the significance of language used by healthcare professionals when discussing the baby's condition; the importance of timely introduction to hospice care; recognition that grief is a personal and evolving process; the role of shared experiences in building relationships; and the importance of creating lasting memories.

Significance of results: Findings highlight the importance of improving healthcare professionals' communication skills and integrating multidisciplinary palliative care services early in the care pathway. Parents expressed gratitude for the hospice support, particularly the opportunity to spend quality time with their baby and make lasting memories. However, a more consistent perinatal hospice care provision across the UK is needed.

Objectives: Communicating a cancer diagnosis to a child is a complex challenge for parents. This study aims to explore (1) the communication strategies and beliefs of parents with cancer when communicating with their children and (2) the needs of these parents.

Methods: Semi-structured interviews were conducted with parents with cancer being treated at an Italian comprehensive cancer center and their healthy partners, when present. The interviews were analyzed through a constructivist approach using reflexive thematic analysis. The number of parents to be interviewed was not predetermined, but the meaning saturation procedure was followed.

Results: Ten parents were interviewed, meaning saturation was reached at the seventh interview. Five themes were created: (1) the challenges parents faced at this sensitive time; (2) the emotions parents experienced; (3) the beliefs that may have influenced how they communicate the illness to their children; (4) the strategies parents used to communicate the illness to their children and (5) parents' perception of their children's understanding of the illness. Fifty-seven needs, often unmet, were also identified and were grouped into three categories: (1) "existential" needs; (2) support needs; and (3) needs related to continuing to be and act as parents.

Significance of results: This study provides important insights for healthcare professionals to consider in order to better support and care for these parents.

Objectives: Persons living with dementia (PLWD) and their caregivers (CG) face a complex disease trajectory, which includes a multitude of challenges related to identifying credible health resources, access to services, and securing emotional support. Scalable, sustainable interventions that guide recently diagnosed PLWD and CG are desperately needed to minimize unnecessary burden and improve quality of life. This article describes the feasibility and acceptability of an early virtual palliative care intervention (SUPPORT-D^TM) for use among PLWD with mild Cognitive Impairment or Alzheimer's disease and their CG.

Methods: Using a quasi-experimental design, this 6-week prospective feasibility study was conducted among 28 (PLWD/CG) dyads and 2 individual CG. Eligibility criteria for PLWD included those with mild cognitive impairment (FAST score ≥4). SUPPORT-D^TM comprises 4 main areas of guided support: 1) understanding the disease, 2) caring for myself, 3) caring for the caregiver, and 4) planning for the future. Outcome data were collected pre/post and during the intervention. Semi-structured interviews were conducted post intervention with 10 dyads. This study was approved by the Medical University of South Carolina IRB and data were collected from January 2023 to March 2024.

Results: Seventy-six percent (23/30) of enrolled dyads successfully completed the study. PLWD and CG scores on validated measures of acceptability, appropriateness, and feasibility indicated SUPPORT-D^TM was acceptable, appropriate, and feasible. Post-intervention interview feedback further evidenced the acceptability, appropriateness, and feasibility of SUPPORT-D^TM.

Significance of results: Delivery of this virtual nurse-led early palliative care intervention (a Program of SUPPORT-D^TM) was feasible for both PLWD and their CGs. A Program of SUPPORT-D^TM has potential as a feasible intervention to provide anticipatory guidance to community-dwelling PLWD and CG. Participants endorsed inclusion of additional content specific to physical activity, stress management, and social support as helpful refinements for future delivery.

Background: Patients with a life-threatening illness and their family caregivers are often affected by biopsychosocial factors that contribute to suffering and burden-sharing and affect quality-of-life.

Objectives: To compare anxiety and depression levels between patients with incurable cancer and caregivers, investigate the association between perceived burdensomeness and psychological outcomes over time, and evaluate factors associated with perceived burden.

Methods: Secondary analysis of a larger prospective, longitudinal study. Patients with incurable cancer and their family caregivers were interviewed every 3 months, from study enrollment to 12 months, to assess psychological factors. Anxiety and depression were measured with Hospital Anxiety and Depression Scale (HADS) and perceived of burden was assessed using distinct questions directed to patients and caregivers about feeling or perceiving caregiving as a burden. For the data analysis, generalized estimating equations were applied to assess the impact of patient and family caregiver related variables on HADS over time, considering anxiety and depression scores as binary variables.

Results: A total of 190 patient-family caregiver dyads were included. Anxiety was more frequent among family caregivers than patients across all follow-up moments. No significant difference was found in mean depression scores. Feeling like a burden to their family (32.6%) was significantly associated with higher anxiety [odds ratio (OR) = 4.45] and depression scores (OR = 2.73). Poor health perception increased the likelihood of anxiety and depression for patients (OR = 11.00; OR = 38.81) and FC (OR = 2.73; OR = 4.30). Family caregivers demonstrated higher psychological distress, with active employment reducing anxiety (OR = 0.54) and depression (OR = 0.43).

Significance of results: The perceived burden experienced by patients with advanced cancer and their family caregivers over time were factors relevant in the disease process. The feeling of being a burden and poor health perception were key factors contributing to psychological distress, underlining the need for specific interventions in palliative care.

Objectives: Futile treatment is defined as maintenance of organ function without achieving meaningful goals of care. Poland is characterized by low prevalence of introducing limitations of treatment in intensive care units (ICUs). The aim of the study was to conduct a questionnaire study to evaluate the approach of Polish medical personnel to futile treatment in the ICUs.

Materials and methods: We conducted an anonymous questionnaire study during a national intensive care conference in April 2023. We collected data on participants' experiences with limiting futile treatment and their demographics. Statistical analysis comparing the responses between respondents with shorter (less than 10 years) or longer (10 years or more) work experience was conducted with a chi-squared test with residual analysis and Bonferroni correction.

Results: 354 respondents completed the questionnaire. Most participants (94.5%) found discussing end-of-life care with patients important. Additionally, 81.6% believed that the medical personnel should be more decisive than the patient's family regarding end-of-life care decisions. While 81% were aware of the existence of futile treatment protocol, only 35% used it regularly. Fear of legal consequences (61.9%) or family's reaction (55.6%) were the most common reasons for not adhering to existing guidelines. Improving hospital procedures (83.6%) and proper legislation (67.2%) were commonly suggested measures to improve end-of-life care. Respondents with shorter work experience more often reported no awareness of futile treatment protocol (28.7% vs. 6.9%, p < 0.001) as well as no experience discussing treatment limitations with patients (24.6% vs. 8.2%, p < 0.001) or their families (20.0% vs. 3.8%) compared to the clinicians with longer work experience.

Significance of results: Despite widespread recognition of the unethical nature of futile treatment, it remains controversial among Polish ICU clinicians. Improvement of legislation and hospital procedures could contribute to improvement of clinicians' and patients' well-being when facing end-of-life care decisions.