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Objectives To evaluate the effectiveness of the Blended Communication Skills Training Program for Nurses (CSTN). The program aims to improve nurses’ knowledge about communication skills and structure for interactions with individuals who a have life limiting illness. Methods This was a quasi-experimental study using a pre- and post-test quiz and self-efficacy questionnaire undertaken in Victoria, Australia. Nurses employed across three wards participated. The Blended CSTN comprised two major components: Asynchronous Web-Based Education Program and Experiential Workshop. The program focused on specific communication challenges: Gathering Information, Dealing with Difficult Questions, and Articulating Empathy. The primary outcome was improvement in knowledge of communication skills and structure. Self-efficacy and perceived importance of communication skills were assessed as secondary outcomes. Results Eighteen nurses completed both Web-Based and Workshop components. Statistically significant increases in knowledge regarding communication skills and structure were found, with a large effect size for Gathering Information (r=0.80) and moderate effect for Articulating Empathy (r=0.62), and Responding to Difficult Questions (r=0.532). Self-efficacy significantly increased for all measured communication skills. Conclusions Knowledge improvements and perceived self-efficacy in communication were observed after nurses participated in a blended education program Practice implications A blended CSTN may improve nurse-patient communication in the clinical setting, worthy of further study.

Context Evidence is needed to inform expansion of hospital-based palliative care in low and middle-income countries. Objectives This study aimed to measure need for palliative care among adult inpatients at five hospitals in Sudan. Objectives were to 1) measure point prevalence of life-limiting and life-threatening illness (LL/LTI); 2) determine patient insight into diagnosis and prognosis; 3) assess palliative care-related symptoms and concerns. Methods In this two-day census, data were extracted from charts on documented LL/LTI for each occupied bed. For patients with LL/LTI, self-report data was collected on symptoms, concerns and understanding of diagnosis and prognosis using Integrated African Palliative Outcome Scale (IAPOS). Results 1) Prevalence of LL/LTI in general hospitals was 30.9%-70.5%. 2) n = 439 patients gave self-report data (response rate 89.8%). Mean age was 52.3 (SD 17.8), 59% of patients correctly knew their diagnosis, and 36% knew their illness was progressive. Those with a non-cancer diagnosis were significantly less likely to know their prognosis (28.4% vs 40.7% respectively, P = 0.012). 3) Family anxiety was most burdensome (56.7% scoring on the two most severe categories on a 6-point Likert), followed by pain (52.4%), poor mobility (40.5%), patient worry (39.9%), and fatigue (36.9%). Patients unaware of prognosis had higher total IAPOS scores than those aware their prognosis was progressive, 38.9 (SD = 15.6) (t = -3.297, P = 0.001, mean difference = -5.010, 95% CI: -7.997, -2.023). Conclusion Care for those with life-limiting and life-threatening illness places a significant occupancy burden on public hospitals. Communication skills are required to provide patients with insight, and core palliative care skills for acute hospital clinicians are needed to manage the high burden of symptoms and concerns.

The 9th October 2021, was World Palliative Care Day. This year’s theme for world palliative care is “Leave No One Behind – Equity in Access to Palliative Care”. Evidence for the outcomes of early palliative care is growing. In 2014, the World Health Assembly passed a resolution that was co-sponsored by Malaysia. The resolution called for countries to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care. One study conducted in Malaysia in 2019 estimated that by 2030, with the increase in noncommunicable diseases, 246 000 patients would require palliative care. For Malaysia to achieve equity in access to palliative care, care for these patients must be integrated into primary care. This article discusses some of the tools available for early identification of patients assessment and management of patients with palliative care needs

Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning.Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family.The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's .126, all p's .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's .318, p's .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = -.369, p .05) and anxiety symptoms (r = -.473, p .01) but not stress scores (r = -.074, p = .644).Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported well-sibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.

Objectives: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. Materials and Methods: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. Results: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers’ context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. Conclusion: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers’ needs and the planning for palliative care support.

Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed ‘Lethal’ fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

Many neurologic diseases are life limiting and markedly impair patients' quality of life. Growing recommendations in the field recommend that neurologists have primary skills in palliative medicine that will allow them to manage symptoms and discuss end-of-life decisions with patients and families. Previous work has shown that formal palliative care training in neurology residencies is very limited. In this article, we briefly describe a national survey of neurology residents where we assess both the quantity and quality of the teaching they receive in end-of-life care as compared to a common and an uncommon neurologic condition. Based on the gaps we identified, as well as previous studies and recommendations in neuropalliative care, we provide 9 recommendations to help neurology residency programs improve their teaching of primary neuropalliative care skills.

In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.

Background: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Aim: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. Design: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. Setting: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children’s hospice. Results: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child’s memory alive and include them in conversation. Conclusions: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.

Background Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care for refractory nausea and vomiting has been limited due to limited experience or evidence of continuous use. Emerging evidence suggests that continuous use is not only safe, but also effective in patients with nausea and vomiting refractory to multiple lines of antiemetic therapy. Methods We conducted a single centre retrospective chart review of children receiving care from a specialist palliative care team who were given continuous daily aprepitant for nausea and vomiting and were unresponsive to at least two prior lines of antiemetic therapy. Parental reports of the impact of nausea on mobility and feeding were used as proxy efficacy markers. Duration of effect and toxicity was also evaluated. Results Ten children (eight with cancer as a primary diagnosis and two with noncancer diagnoses) received continuous aprepitant and all showed resolution of nausea and vomiting and an increased ability to mobilize and tolerate feeds. No adverse events noted. Conclusion Our review suggests a role for aprepitant in management of refractory nausea and vomiting, demonstrating safety and efficacy. This case series is the first report of aprepitant use in this manner in the paediatric palliative care setting.

Background: Despite international developments in paediatric palliative care (PPC), nurses continue to report feeling unprepared, anxious and overwhelmed when caring for patients with palliative care needs. There is an identified need throughout the literature for improved education in the area of PPC, as well as the need to improve the support available to families and health professionals in order to provide this specialised care effectively. Aim: To examine the insights of nurses within the acute setting who are caring for children with life-limiting conditions, who have complex and/or palliative care needs in Ireland. Method: This was a qualitative study which used purposive, convenience sampling to gain participants (N=14) and semi-structured interviews to gather data. Thematic analysis was used to discuss the material under five core themes. Findings: Results are discussed under the five core themes of: ‘nurses’ emotive journey when caring for children with life-limiting conditions’, ‘the barriers faced in caring for children with life-limiting conditions in the acute setting’, ‘the facilitators to caring for children with life-limiting conditions in the acute setting’, ‘education and training’ and ‘how nurses cope when a child dies’. Conclusion: Each participant of this study described a particular affection towards caring for children with complex healthcare needs within the acute setting. However, many of the obstacles faced by nurses in the acute setting when providing this care were reported upon, these included inefficient training, education and support, an inadequate nursing environment to provide the desired level of care and the emotional toll of providing such an intense level of care.

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver's quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient's socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236–0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person's preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management.

Glioma remains incurable and a life limiting disease with an urgent need for effective therapies. Sonodynamic therapy (SDT) involves systemic delivery of non-toxic chemical agents (sonosensitizers) that accumulate in tumor cells or environment and are subsequently activated by exposure to low-frequency ultrasound to become cytotoxic agents. Herein, we discuss proposed mechanisms of action of SDT and provide recommendation for future research and clinical applications of SDT for gliomas. Review of literature of SDT in glioma cell cultures and animal models published in Pubmed/MEDLINE before January, 2021. Different porphyrin and xanthene derivatives have proven to be effective sonosensitizers. Generation of reactive oxygen species and free radicals from water pyrolysis or sonosensitizers, or physical destabilization of cell membrane, have been identified as mechanisms of SDT leading to cell death. Numerous studies across glioma cell lines using various sonosensitizers and ultrasound parameters have documented tumoricidal effects of SDT. Studies in small animal glioma xenograft models have also consistently documented that SDT is associated with improved tumor control and longer survival of animals treated with SDT while avoiding damage of surrounding brain. There are no clinical trials completed to date regarding safety and efficacy of SDT in patients harboring gliomas, but some are beginning. Pre-clinical studies cell cultures and animal models indicate that SDT is a promising treatment approach for gliomas. Further studies should define optimal sonication parameters and sonosensitizers for gliomas. Clinical trials of SDT in patients harboring gliomas and other malignant brain tumors are currently underway.

This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and was subsequently analysed using qualitative thematic content analysis. The findings identified a range of complexities unique to the care of children with life-limiting conditions in the intellectual disability setting. From the findings, it is clear that this is a population of highly skilled nurses who work in a challenging and complex area of practice. Further supports are required in order to meet the practice needs and support the emotional needs of this population of nurses. In doing so, high quality practice within the area will be promoted, thereby ensuring high quality care for the children and families within the disability service.

Purpose To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. Design and methods A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. Findings ‘Starting out in haziness’ was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: ‘Entering a whole new world’, ‘Acquiring a learner permit’ and ‘Navigating the unknown territory’. Conclusion Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.

Background: It is not clear whether use of specialty palliative care consults and “comfort measures only” (CMO) order sets differ by type of intensive care unit (ICU). A better understanding of palliative care provided to these patients may help address heterogeneity of care across ICU types. Objectives: Examine utilization of specialty palliative care consultation and CMO order sets across several different ICU types in a multihospital academic health care system. Design: Retrospective cohort study using Washington State death certificates and data from the electronic health record. Setting/Subjects: Adults with a chronic medical illness who died in an ICU at one of two hospitals from July 2013 through December 2018. Five ICU types were identified by patient population and attending physician specialty. Measurements: Documentation of a specialty palliative care consult during a patient's terminal ICU stay and a CMO order set at time of death. Results: For 2706 eligible decedents, ICU type was significantly associated with odds of palliative care consultation (p

This is a prospective registration of a protocol for a scoping review on available parent reported experience measures.

Background: Exploring children’s experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent’s perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. Aim: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. Design: A qualitative study using dyadic interviews and thematic analysis. Setting/participants: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. Results: Interview data demonstrated that there was a gap in the child’s experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. Conclusions: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.

Background: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. Aim: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. Methods: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. Findings: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. Conclusion: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O’Malley’s framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Background and objectives Parents of children with life-limiting diseases are central informal care providers. They fill out their role as co-producers of the health care system in different ways, as empirically reconstructed parent type's show. In this article, the heterogeneous social practice of physiotherapeutic care provision is reflected from the perspective of self-regulation theory. The aim is to identify starting points for how parental self-efficacy can be positively influenced by educational support. Method The types of parents reconstructed by means of the Documentary Method according to Ralf Bohnsack serve as a starting point for the theoretical consideration. First, the theory of self-regulation and findings from research on increasing parental self-efficacy are presented. In the following, we will discuss how parents of children with life-limiting illnesses regulate themselves or develop self-efficacy when taking over care. Finally, it is shown which findings result from the theoretical consideration for an educational concept development. Results This theory-guided consideration of empirically generated parent types shows that their self-perception and situation perception, motivation and level of participation, self-regulation processes and trained self-efficacy vary significantly. There is evidence that parent-oriented information, observation of peers in groups and the possibility of positive experiences have a positive influence on self-efficacy. Conclusion These elements should be taken up in the development of educational intervention concepts for this target group and systematically tested for their effects.

Spinal muscular atrophy (SMA) is one of the most recognised life-limiting conditions in paediatric palliative care. Despite the advancement of medical technology, many children with severe SMA die early. Often, managing physicians are trapped in dilemma whether to go all-out treating these patients or to be more conservative using palliative approach, knowing our limited resources and the futility of the treatment outcome. This article discusses the challenging aspect of managing these patients by using Islamic medical ethics to resolve this dilemma.

ObjectiveTo assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital.DesignObservational cohort study using linked routinely collected data.SettingEngland.PatientsChildren aged 0–25 years who died between 2003 and 2017.Main outcome measuresPlace of death: hospital, hospice, home. Multivariable multinomial logistic regression models.Results39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1–10 years more likely, than those aged 28 days to Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths.ConclusionsMost children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.

There is an increasing body of literature that seeks to explore what is ‘sensitive’ about ‘sensitive’ research but there is, arguably, an even larger canon of literature that refers more commonsensically to ‘sensitive’ research without seeking to problematise it.\ud \ud In order to problematise and interrogate this concept, this paper draws on four related projects exploring sex, intimacy and relationships for people, over 16 years, who have life-limiting or life-threatening conditions (LLTCs). In particular, we focus on how, when and why these projects were regarded as ‘sensitive’ and consider who defined them as such. Drawing on the notion of methodological performativity, whereby methods are seen to ‘bring into being what they also discover’, we examine aspects of the process of doing ‘sensitive’ research, exploring how research methods and techniques are employed because the research has already been defined (by others and by us) as ‘sensitive’ while simultaneously serving to (re)construct and (re)enforce the ‘sensitive’ nature of it.

Background: There is a growing body of qualitative studies examining parents’ experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers’ needs remains sparse and is often diluted among a predominant ‘mother’s voice’, raising questions about whether practices in clinical settings meet fathers’ needs. Aim: To provide an in-depth assembly of the current state of knowledge around fathers’ experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. Design: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers’ experiences of caring. Data sources: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers’ care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. Results: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers’ caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, ‘nobody thinks of men’, impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. Conclusion: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.

This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Background: The concept of pediatric palliative care (PPC) is applied diferently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. Methods: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. Results: The data analysis of the concept of pediatric palliative care resulted in two themes. The frst theme “A fright ening concept that evokes negative emotions,” contains categories to explore the meaning, named “An unfamiliar and not meaningful concept, “A concept still associated with death and dying” and “Healthcare professionals’ responsibility for introducing and using the concept and, to obtain a common meaning.” The second theme was named “A broad and complementary concept,” containing the categories “Total care for the child and the family,” “Making room for life and death at the same time” and “The meaning of alleviation and palliative care.” Conclusions: The included HCPs refected diferently around PPC but most of them highlighted quality of life, total care for the child and the child’s family and interdisciplinary collaboration as core elements. Attention to and knowl edge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.

Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Data analysis resulted in three themes related to parental participation in children’s medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families’ holistic needs and how children’s physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers’ hope, coping, and well-being. The findings add depth to existing literature, and identify opportunities for addressing families’ unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents’ ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change.

Caring for a child with a neuromuscular condition such as Duchenne muscular dystrophy (DMD) presents many challenges, including managing the emotional impact of the diagnosis, managing extended periods of profound uncertainty, navigating the complexities of the healthcare system, managing the child’s physical symptoms, and supporting their emotional needs. Although it is encouraging that there is a growing body of research seeking to better understand the medical and treatment needs of those with DMD, the psychosocial needs of individuals and their families have traditionally been considered as ancillary to the child’s physical health needs. Consequently, there is limited research investigating the psychological wellbeing of those with DMD, and even less is known about the psychological wellbeing and needs of caregivers, who play a critical role in supporting their child. Caregivers experience multiple stressors and often encounter caring burden and high prevalence rates of anxiety and depression. This paper aims to explore the use of cognitive behavioral therapy (CBT) for comorbid anxiety and low mood in a parent of a child with DMD using a single case design. Results suggest that in the context of multiple stressors and significant life events, CBT was effective in improving mood and reducing symptoms of anxiety. This case highlights the value in offering support to parents of children with DMD and may have clinical implications for other neuromuscular and life-limiting conditions.

Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed.

Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support a...

Background: Lack of awareness about the life-limiting nature of renal failure is a significant barrier to palliative care for older adults with end-stage renal disease. Objective: To train nephrologists to use the best case/worst case (BC/WC) communication tool to improve shared decision making about dialysis initiation for older patients with limited life expectancy. Design: This is a pre-/postinterventional pilot study. Setting/Subjects: There were 16 nephrologists and 30 patients of age 70 years and older with estimated glomerular filtration rate (eGFR)

Objectives: The objective of this study is to identify contextual access factors to home and community health services for end-of-life support for older adults with serious life-limiting illness, as well as determine if access to home and community services is associated with health-care utilization. Design: This study includes an environmental scan, grey literature review, qualitative interviews, and health-care utilization analysis. This study is a subproject of the Grudzen et al. Primary Palliative Care for Emergency Medicine (PRIM-ER) study. Settings/Location: Analysis will include data collection from 17 health systems implementing the PRIM-ER intervention. Participants: For the qualitative interviews, one emergency medicine (EM) physician and one EM nurse will be interviewed from each of the 17 participating health systems. For the health-care utilization analysis, we will use the Senior Care Services Scale (SCSS), American Hospital Association Annual Survey of Hospitals (AHA-ASH), and Medicare claims for all emergency department (ED) visits for serious illness who present at each participating health system. Outcome Measures: The contextual analysis will obtain data on home and community services, such as hospice, home health services, assisted living, integrative medicine services, etc., available around each health system’s highest volume ED, federal and state regulations influencing access to services, as well as EM provider perspectives on access to services. The health-care utilization analysis will determine if SCSS scores, which measure service availability, are associated with health-care usage. High or low SCSS scores are determined by comparing health system service availability on the AHA-ASH to the national median SCSS value.

There are an increasing number of young people with a range of life-limiting impairments in our schools, colleges, universities and communities. One of these impairments is Duchenne Muscular Dystrophy (DMD), a rare, life-limiting genetic muscle-wasting impairment that affects predominantly males. Twenty years ago, most people with DMD did not live past the age of twenty years, but now due to a range of treatments they are living longer. However, education and social care services are often yet to catch up with this improved prognosis. The aim of this paper is to compare the findings from structured conversations with members of the DMD community in Denmark and England. Historically, adults in Denmark have reported a good quality of life with an optimal health care programme and generous social care, whereas adults with DMD in England have reported poor transition to adulthood planning leading to social isolation as an adult. Findings identified three key themes: the existence of normative goals; expertise from lived experience, and the meaning of independence for someone with a complex impairment. These themes are further discussed through the lens of ‘post-human thinking’, and implications for practice are explored.

Informal care is recognised as a significant resource in the care of older adults living with a chronic life-limiting illness. This review aims to assess the existing literature on how informal care can support older people living with chronic life-limiting illness in Africa. An integrative review framework was used. Three themes emerged to focus on chronic illness management as a social and clinical matter; cultural obligations contingent on the availability of people and resources; and burden of care relieved by connection with the church. Social policies should be structured to support caregivers and older adults to strengthen the ties between community social organisations and their families.

ObjectiveThe research project addressed the need to support young adults with issues relating to sexuality and relationships though the development of guidance and standards for practice.MethodsAn action research project underpinned by an interpretivist qualitative framework. Participants were recruited to the project via three hospices in the UK. Data from four focus groups were analysed thematically using a process of constant comparison.ResultsSixteen young adults with life-limiting or life-threatening conditions aged 21–33 years participated in the study. Three significant themes were identified: sexuality and the transition to adulthood, recognising the significance of sex and relationships, and realising sexual rights.ConclusionSexuality and relationships play an important role in the transition to adulthood for people with life-limiting or life-threatening conditions living in the UK. While young adults with these conditions may have considerable support needs, it is important to balance this with the freedom to exercise choice and to make independent decisions. Sex negativity can have an adverse impact on the experiences of young adults and creates barriers. Improved ongoing access to sex education and the provision of enabling environments that afford privacy and safety are important to support young adults with sexuality and relationships.

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( r = –.63, p Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

BackgroundGPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases.AimTo investigate the association between GP attendance patterns and hospital urgent and emergency care use.Design and settingRetrospective cohort study using a primary care data source (Clinical Practice Research Datalink) in England. The cohort numbered 19 888.MethodCYP aged 0–25 years with an LLC were identified using Read codes (primary care) or International Classification of Diseases 10 th Revision (ICD-10) codes (secondary care). Emergency inpatient admissions and accident and emergency (A&E) attendances were separately analysed using multivariable, two-level random intercept negative binomial models with key variables of consistency and regularity of GP attendances.ResultsFace-to-face GP surgery consultations reduced, from a mean of 7.12 per person year in 2000 to 4.43 in 2015. Those consulting the GP less regularly had 15% (95% confidence interval [CI] = 10% to 20%) more emergency admissions and 5% more A&E visits (95% CI = 1% to 10%) than those with more regular consultations. CYP who had greater consistency of GP seen had 10% (95% CI = 6% to 14%) fewer A&E attendances but no significant difference in emergency inpatient admissions than those with lower consistency.ConclusionThere is an association between GP attendance patterns and use of urgent secondary care for CYP with LLCs, with less regular GP attendance associated with higher urgent secondary healthcare use. This is an important area for further investigation and warrants the attention of policymakers and GPs, as the number of CYP with LLCs living in the community rises.

Aim Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life‐limiting conditions. Methods Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.

Life-limiting behavior of a melt-infiltrated (MI) silicon carbide fiber-reinforced silicon carbide matrix (SiC/SiC) ceramic matrix composite (CMC) was determined under interlaminar shear at 1316 °C in air using double-notch-shear test specimens. The three different shear loading configurations of dynamic fatigue, static fatigue, and cyclic fatigue were employed to assess their individual respective lives. The MI SiC/SiC CMC exhibited low susceptibility to fatigue (“slow crack growth”) regardless of loading configuration. A life prediction model for interlaminar shear in cyclic fatigue was developed based on the fracture mechanics framework. The newly developed cyclic fatigue model as well as the previously developed dynamic and static fatigue models were all in good agreement with the experimental data, indicating that the governing failure mechanism under interlaminar shear was consistent, independent of fatigue loading configuration.