The role of fat-soluble vitamins for graft-versus host disease after myeloablative conditioning in allogeneic stem cell transplanted patients.

Whether the fat-soluble vitamins A, D, E, and K are associated with development of graft-versus-host disease (GvHD) after allogeneic stem cell transplantation, is unclear. We assessed if the levels of these vitamins were associated with development of GvHD during the first year after transplantation using data from a two-armed randomized nutritional intervention trial. Changes in plasma levels during 1-year follow-up were analyzed using a linear mixed model for repeated measurements.

Parents' perception of treatment-related toxicity in children treated according to the NOPHO ALL2008 protocol for acute lymphoblastic leukemia.

This study aimed to assess how parents perceived treatment-related side effects during acute lymphoblastic leukemia (ALL) treatment. Parents of children 1-17.9 years at diagnosis in Sweden, Finland, and Denmark who were alive and in first remission ≥6 months after end of ALL treatment were asked to respond on specific items regarding how their child was affected by side effects related to vincristine (VCR), corticosteroids, peg-asparaginase (ASP), and maintenance therapy, as well as overall impact of these treatments, complications in general, and their perception of impact on their child in comparison with other children with ALL.

International consensus on sleep problems in pediatric palliative care: Paving the way.

Objective: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care.

Children with palliative care needs - the landscape of the nordic countries.

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research.

Overall Survival after Radiotherapy for Brain Metastases According to ECOG Status-A Prospective Study of 294 NSCLC Patients.

Up to 40% of non-smallcell lung cancer (NSCLC) patients develop brain metastases (BMs). The potential benefits of radiotherapy (RT) in patients with poor performance status (PS) are questionable, with considerable risk for futile treatment. We analyzed overall survival after initial radiotherapy in NSCLC patients with BMs, focusing on the relationship between PS and survival after RT.

Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol.

Background: The improved outcome of childhood acute lymphoblastic leukemia (ALL) over the last decades has increased the importance of assessing late effects and health-related quality of life (HRQoL), particularly when evaluating and comparing outcomes in clinical trials. This study aimed to assess HRQoL in children treated for ALL according to the NOPHO ALL2008 protocol.

Procedure: Children, aged 1 to less than 18 years at diagnosis, alive in first remission, and their parents, were asked to complete PedsQL 4.

Symptoms and quality of life among men starting treatment for metastatic castration-resistant prostate cancer - a prospective multicenter study.

Background: Men with metastatic castration-resistant prostate cancer (mCRPC) have an incurable disease. Along with prolonging life, symptom management is one of the main goals with treatment. This is also important from a palliative care perspective where the life prolonging outcomes should be balanced with quality of life (QoL) in this late phase.

The Family Talk Intervention in Pediatric Oncology: Potential Effects Reported by Parents.

Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated.

Postgraduate nursing students' experiences with simulation-based learning in palliative care education: A qualitative study.

Aim: The aim of this study was to explore postgraduate palliative care nursing students' experiences with simulation-based learning focusing on communication skills, as a learning method in palliative care education.

Background: Communication is one of several important competencies in palliative care and found to be challenging. Developing appropriate communication skills in palliative care requires education and practice.

Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention.

Background: Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents' couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents' experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI).

Teaching to prepare undergraduate nursing students for palliative care: nurse educators' perspectives.

Background: Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons.

Family caregivers' experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention - A qualitative study.

Purpose: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods: The study used an inductive qualitative descriptive design based on framework analysis.

Parental experiences of the informed consent process in randomized clinical trials-A Nordic study.

Background: Randomized clinical trials (RCTs) are an essential part of improving acute lymphoblastic leukemia (ALL) treatment. This population-based questionnaire study investigated parents' experiences of the informed consent process in the RCTs within the Nordic NOPHO (Nordic Society of Paediatric Haematology and Oncology) ALL2008 trial.

Procedure: Parents in Sweden, Denmark, and Finland whose child was alive and in first remission after end of therapy and who were asked to participate in any RCT in the ALL2008 protocol, were asked to complete 15 questions/items regarding their experience of the RCT consent process.

Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study.

Purpose: Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses' (RNs') experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

Health-related quality of life of children with spinal muscular atrophy in Sweden: A prospective cohort study in the era of disease-modifying therapy.

The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.

Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness.

Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood.

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss.

Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention.

Objectives: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study.

Background: Parentally bereaved children are at increased risk of negative consequences, and the mediating factors most consistently identified are found to be related to family function after the loss, including cohesion. However, existing evidence is limited, especially with respect to children and youths' own perception of family cohesion and its long-term effects on health and well-being. Therefore, the aim of this study was to investigate self-reported family cohesion the first year after the loss of a parent to cancer and its association to long-term psychological health and well-being among young adults that were bereaved during their teenage years.

Simulation-based learning in palliative care in postgraduate nursing education: a scoping review.

Background: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education.

Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges.

Objectives: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

Methods: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics.

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

Background: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context.

Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review.

Background: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care.

Nursing as a balancing act in allogeneic hematopoietic cell transplantation -nurses' experiences through participation in workshops.

Purpose: Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT.

Method: An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops.