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Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to examine the healthcare professionals' perceptions after implementing the "PACE Steps to Success" program in the French‐speaking part of Switzerland. Design: A qualitative descriptive study. Methods: Thematic analysis of semi‐structured face‐to‐face and group interviews with health professionals, PACE coordinators, and managers purposely invited in the four long‐term home facilities that had previously participated in the PACE cluster randomized clinical trial intervention group. Results: The PACE program implementation has improved communication with residents regarding end‐of‐life issues and helped identify patients' needs. The introduction of codified tools can complete internal tools and support decision‐making. In addition, the training has promoted inter‐professional collaboration, particularly in the case of care assistants, by defining each profession's specific responsibilities in providing care for older adults. [ABSTRACT FROM AUTHOR]

Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end‐of‐life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi‐structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category 'holding the balance' and four secondary categories: 'Organising support', 'being present', 'managing everyday life' and 'keeping up with ALS'. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories. [ABSTRACT FROM AUTHOR]

Background: Decisions about medical indication are a relevant problem in pediatrics. Difficulties arise from the high prognostic uncertainty, the decisional incapacity of many children, the importance of the family, and conflicts with parents. The objectivity of judgments about medical indication has been questioned. Yet, little is known about the factors pediatricians actually include in their decisions. Aim: Our aims were to investigate which factors pediatricians apply in deciding about medical indication, and how they manage conflicts with parents. Design: We performed a qualitative focus group study with experienced pediatricians. The transcripts were subjected to qualitative content analysis. Setting/participants: We conducted three focus groups with pediatricians from different specialties caring for severely ill children/adolescents. They discussed life-sustaining treatment in two case scenarios that varied according to diagnosis, age, and gender. Results: The decisions about medical indication were based on considerations relating to the individual patient, to the family, and to other patients. Individual patient factors included clinical aspects and benefit–burden considerations. Physicians’ individual views and feelings influenced their decision-making. Different factors were applied or weighed differently in the two cases. In case of conflict with parents, physicians preferred solutions aimed at establishing consensus. Conclusion: The pediatricians defined medical indication on a case-by-case basis and were influenced by emotional reasoning. In contrast to prevailing ethico-legal principles, they included the interests of other persons in their decisions. Decision-making strategies should incorporate explicit discussions of social aspects and physicians’ feelings to improve the transparency of the decision-making process and reduce bias. [ABSTRACT FROM AUTHOR]

Aims (a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home. Background Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs. Design Sub-study of the nationwide multicenter study 'Paediatric End-of-Life CAre Needs in Switzerland' using a concurrent qualitative embedded mixed methods design. Methods Data will be collected from January-May 2014 through community care organizations and children's hospitals. The study includes approximately 40-50 families whose child (0-18 years) died in the years 2011-2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by 'thematic analysis'. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis. Discussion This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home. Study registration: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852. [ABSTRACT FROM AUTHOR]

Background: Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Methods: Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. Results: Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and--more frequently--“to spare others from the burden of oneself”. Conclusions: The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients. [ABSTRACT FROM AUTHOR]