Palliative & Supportive Care最新文献

Objectives: Open communication between parents and adolescents and young adults (AYAs) with blood cancer is key to managing cancer together. However, parents avoid difficult conversations about cancer care and lack support in navigating them. To inform a communication skills intervention to help parents of AYAs navigate challenging conversations in caregiving, this mixed-method study sought to identify difficult topics and better understand psychosocial factors associated with avoidant communication.

Methods: Phase 1 involved 20 interviews with parents of AYAs with blood cancer (aged 15-29) to capture difficult conversations and factors that inform why they are challenging. Phase 2 surveyed 80 parents about openness, avoidance, and psychosocial outcomes.

Results: In Phase 1, parents identified 5 challenging conversation areas: (1) expressing negative feelings; (2) discussing disease/care-related information; (3) addressing sexual health; (4) navigating triadic clinical interactions; and (5) talking about mortality. Parents described 3 interrelated factors that informed why these conversations were difficult: (1) lifespan/human development; (2) emotional/psychological well-being; and (3) relational-caregiving dynamics. Quantitative results (Phase 2) confirmed the same challenging conversation areas and extended them with an additional topic parents avoid: caregiver burden. Overall avoidance of these topics was associated with lower clinical communication skills and competence, less openness between parents and AYAs, reduced willingness to communicate about cancer, and greater parental distress. Avoidance of discussing caregiver burden and sexual health with their AYA was associated with higher burden. Younger parents reported higher overall avoidance compared to older ones. Hispanic/Latino parents reported higher overall avoidance than non-Hispanic/Latino. Parents without a high school degree had higher scores for avoiding treatment discussions compared to parents with higher education levels.

Significance of results: Findings highlight the need for supportive care interventions that strengthen parent caregivers' communication skills. This study also provides a roadmap of key content to include, ensuring communication skills interventions are relevant and impactful.

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.