Background: The field of perinatal palliative care aims to support the unique needs of parents who choose to continue pregnancy following the diagnosis of a life-limiting fetal condition (LLFC). As parents navigate this challenging trajectory, the support they receive from healthcare providers is crucial in shaping parental experiences. Objective: to critically reflect on existing literature and to reveal a deeper understanding of the experience of continuing pregnancy in the presence of a LLFC Design: Qualitative meta-synthesis Methods: The primary search strategy consisted of multiple searches within four electronic databases. The analysis was guided by thematic analysis. Results: This meta-synthesis included 29 qualitative studies. Three main themes were identified; time, uncertainty and relationships. These concepts exist concurrently within this trajectory and continuously influence each other as well as the overall experiences of parents. Conclusion: Nurses are encouraged to acknowledge the significance of the interconnectedness between these key concepts and to critically reflect on how their everyday interactions become part of parents’ lived experiences.

Background: Despite the increased presence of clinical psychologists in paediatric services, including palliative care teams, there has been little research into their experience of working with children with life-limiting conditions. Existing studies have tended to focus mainly on the experience of medical professionals working in this area. Such studies have found that working with life-limiting conditions and child death has a significant impact on medical professionals, causing stress, burnout and feelings of professional failure. As clinical psychologists have a role in supporting the emotional needs of children, families and staff teams, it is important to explore their experiences, the impact that such work has on them, and any potential personal and professional implications. Aims: After identifying the above gap in the research, this study aimed to explore clinical psychologists‟ experiences of working with children with life-limiting conditions. Method: Semi-structured interviews were conducted with seven qualified clinical psychologists who were working in hospital settings with children with life-limiting conditions. The transcripts of the interviews were then analysed using Interpretative Phenomenological Analysis (IPA). Results: Three superordinate themes emerged from the analysis: „The meeting of two worlds: When psychology and medicine converge‟, „Nobody is immune: Facing the challenges of working of life-limiting conditions‟ and „Balancing the rough with the smooth: Finding a way to manage‟. Implications & conclusion: Participants experienced challenges in having to adapt to a medical world and in facing emotional impacts however, they also reported positive experiences from their work. The study raised many implications for clinical practice including the need to potentially help psychologists to prepare for the possible changes required when practicing in a hospital setting. This could perhaps be incorporated more into clinical training or be provided as in-house training when starting in the post.

TITLE: Palliative Care: Viewpoints from Nurses Palliative Care has been described as care that includes the physical, intellectual, emotional, social, and spiritual needs of an individual when they are diagnosed with a serious or life-limiting illness. The ultimate goal of palliative care is to promote the best quality of life possible. Palliative care should be implemented across the lifespan and across different health care settings. The purpose of this study was to describe the perceptions, impact, and meaning of palliative care from the viewpoint of nurses who provide basic palliative care to patients and their families. This study used a qualitative design to investigate the meaning, experiences, and feelings of nurses who provide palliative care in small or critical access hospitals and other agencies in this rural area. Three focus groups and eleven interviews were conducted with nurses working in a variety of agencies from October 2015 to February 2016. The four themes that emerged from the data included inconsistencies, knowledge deficits, communication issues, and emotional responses and rewards to providing palliative care. The themes focused on the need for clarification of the meaning of palliative care, more education on the topic and better communication. The nurses shared that it was rewarding to provide palliative care but identified barriers that they felt should be addressed. Nurses participating in the study did not perceive that they had palliative care at their agencies. Recommendations included that more health education about palliative care be provided to healthcare professionals, the community, and individuals with life-limiting illnesses and their families. Key words: palliative care, quality of life, life-limiting illness, nursing

Yes

The purpose of this naturalistic inquiry was to describe, interpret, and link through voices of parents the lived experience of caring for a child with a lifelimiting and lifethreatening diagnosis within the context of existing social polices. Critical ethnology and Habermas critical theory framework together provided a broad framework from which to delve beneath the surface of everyday appearances and to produce theoretically informed accounts of social phenomena grounded in parents perceptions of caring for children who have palliative care needs. This framework provided the means to deconstruct power structures and relationships to reveal and redress oppression by unlocking silent discourses, emancipating voices, and empowering families. The stories of six parents were captured and presented a critical discourse concerning outcomes of the operationalized welfare state within a liberal paradigm that celebrates the autonomous individual as the appropriate unit of political analysis. <p>Four themes emerged that illuminated and provided a fuller understanding of the lived experiences of parenting a child with a lifelimiting and lifethreatening diagnosis. The initial theme, Mother as Caregiver, described the profound effect that assuming the caregiving role had on the lives of these mothers. The theme, Respite and Coping, explored and identified the overwhelming need for parents to obtain relief through respite, so they could parent better. The third theme, Surviving Past Expectancy, explained how their child, outliving their initial diagnosis, placed yet another new stress and burden on the family. The final theme, Getting Everyone on the Same Page, described frustrations parents experienced on a regular basis trying to find services and then act as coordinator for their child and family.<p>This study provided a unique and valuable optic to an untapped data source, which until now has remained silent. Results demonstrate the significance and meaning of the identified themes and their interrelatedness, and the study concludes with a discussion of the findings and policy implications. The main findings were the untapped resilience and strength of each participant, the uniqueness of each of their stories, and the reality that the harms associated with having a child with a lifelimiting and lifethreatening diagnosis can certainly be lessened through social polices that direct the provision and access to pediatric palliative care services to all who require them. A researchedbased understanding of the lived experience and the contextual nature of parents perceptions provides policymakers, politicians, and health care professionals an opportunity to offer specialized services and programs to children with lifelimiting and lifethreatening diagnosis and their families.

The purpose of this naturalistic inquiry was to describe, interpret, and link through voices of parents the lived experience of caring for a child with a lifelimiting and lifethreatening diagnosis within the context of existing social polices. Critical ethnology and Habermas critical theory framework together provided a broad framework from which to delve beneath the surface of everyday appearances and to produce theoretically informed accounts of social phenomena grounded in parents perceptions of caring for children who have palliative care needs. This framework provided the means to deconstruct power structures and relationships to reveal and redress oppression by unlocking silent discourses, emancipating voices, and empowering families. The stories of six parents were captured and presented a critical discourse concerning outcomes of the operationalized welfare state within a liberal paradigm that celebrates the autonomous individual as the appropriate unit of political analysis. <p>Four themes emerged that illuminated and provided a fuller understanding of the lived experiences of parenting a child with a lifelimiting and lifethreatening diagnosis. The initial theme, Mother as Caregiver, described the profound effect that assuming the caregiving role had on the lives of these mothers. The theme, Respite and Coping, explored and identified the overwhelming need for parents to obtain relief through respite, so they could parent better. The third theme, Surviving Past Expectancy, explained how their child, outliving their initial diagnosis, placed yet another new stress and burden on the family. The final theme, Getting Everyone on the Same Page, described frustrations parents experienced on a regular basis trying to find services and then act as coordinator for their child and family.<p>This study provided a unique and valuable optic to an untapped data source, which until now has remained silent. Results demonstrate the significance and meaning of the identified themes and their interrelatedness, and the study concludes with a discussion of the findings and policy implications. The main findings were the untapped resilience and strength of each participant, the uniqueness of each of their stories, and the reality that the harms associated with having a child with a lifelimiting and lifethreatening diagnosis can certainly be lessened through social polices that direct the provision and access to pediatric palliative care services to all who require them. A researchedbased understanding of the lived experience and the contextual nature of parents perceptions provides policymakers, politicians, and health care professionals an opportunity to offer specialized services and programs to children with lifelimiting and lifethreatening diagnosis and their families.

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.

No / Context. The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. Objectives. To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. Methods. A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. Results. Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. Conclusion. Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

As a life-limiting illness mediated by rapid advancements in biomedical technologies, metastatic breast cancer (MBC) now presents in increasingly unexpected ways where women are living longer. These women’s lives may not fit well with established healthcare and societal understandings of an advanced breast cancer, including disease progression and prognosis. This qualitative inquiry aims to think differently about women’s daily lives with an ongoing MBC. While also considering the underexplored context of these women living in smaller communities. I explored communities on Central Vancouver Island, which is on the west coast of British Columbia, Canada. The research question directing my inquiry was: how are women, who are living with MBC as a life-limiting illness over an extended period, produced as both living and dying subjects? Informing this research was a feminist relational materialist approach with a healthcare practitioner orientation, primarily informed by Braidotti. I used multiple data collection methods centred around sequential interviews with 14 women who had been living relatively well with MBC for at least two years. Working with relational materialist and post qualitative principles, analysis disclosed the importance of temporal pulses and bodily transpositions in women’s lives. Temporal pulses speak to how time was laden with tensions such that a distinctive part of living with ongoing MBC was an embodied sense of fluctuating time. There was also the idea as to how, at any given moment, women could bodily know their illness and mortality through varying frequencies of the presence and/or absence of markers of living and dying, often at the same time. Bodily transpositions speak to how life-limiting illness was not so much about women moving from one set of circumstances to another as part of a clean-edged transition. Rather, the women navigated daily life with few set waymarkers. Within this context, ‘hope’ took on new forms and living with their advanced breast cancer became a kind of endurance demarcated by what I refer to as generative living. These findings call into question the ways in which MBC gets talked about in categorical terms as palliative or end of life, and/or as chronic. Findings are an opportunity for healthcare practitioners, policymakers, and interdisciplinary leaders to further understand MBC specific to our contemporary context. Project findings renew discussions of how best to support women’s needs, including the ways MBC is talked about. There is also the opportunity to direct further research into MBC as an example of today’s shifting boundaries of living and dying (which I am framing as living<=>dying). / Graduate

Bakgrund: Den palliativa vården ska se till hela familjens behov av stöd. Lagen är tydlig vad gäller barns rättigheter när en förälder är sjuk, men syskon som grupp blir ofta förbisedda. Syskon som mist en närstående har ökad risk för ångest och depression, men löper även högre risk för missbruk, och detta kan relateras till hur syskonen upplevde situationen när deras bror eller syster var sjuk. Barn och unga är en särskilt sårbar grupp som behöver extra omsorg i och med en högre risk för komplicerad och långvarig sorg, och sjukvården har ett ansvar i att stötta dessa individer. Genom ökad kunskap om syskons erfarenheter av att leva med en svårt sjuk bror eller syster kan vi konstruera adekvat stöd baserat på deras behov. Syfte: Att beskriva syskons erfarenheter av att leva med en svårt sjuk bror eller syster. Metod: En litteraturöversikt baserad på 13 originalartiklar, insamlade från två databaser, publicerade mellan 2013–2023. En tematisk analys gjordes utifrån Braun och Clarkes analysmodell. Resultat: Tre huvudteman framkom vid sammanställning av resultat: Att hantera sig själv och sina känslor beskriver syskonens utsatthet och känsla av isolering - en känsla av att hamna i skuggan av sin bror eller systers sjukdom, där en stark önskan om att bli sedd, men en ovilja att ta plats framkom, och stöd från omgivningen var uppskattat. Känslan av förståelse beskriver att information och inkludering uppskattas - att de oftast vet om när saker går osagda och att de själva tvingas läsa mellan raderna kring vad de ser och vad som sägs. Det nya normala beskriver förändring i situation och vardag - där familjen blev allt viktigare, men att rollerna inom familjen förändrades, och det ständigt fanns en närvaro av oro kring den sjuka brodern eller systern. Slutsats: Sjuksköterskor och annan vårdpersonal bör känna till och beakta syskons känsloliv och önskningar för att på bästa sätt kunna stötta och hjälpa syskonet genom den svåra tiden. För att nå upp till barnkonventionen, som numera är lag, gäller detta även för sjukvårdspersonal inom vuxenvården, då barn som har palliativa vårdbehov många gånger vårdas inom vuxenkliniker. / Background: Palliative care must take care of the entire family's need for support. The law is clear regarding children's rights when a parent is ill, but siblings as a group are often overlooked. Siblings who have lost a loved one have an increased risk of anxiety and depression, but are also at higher risk of substance abuse, and this can be related to how the sibling experienced the situation when their brother or sister was ill. Children and young people are a particularly vulnerable group that needs extra care due to a higher risk of complicated and prolonged grief, and the healthcare system has a responsibility to support these individuals. Through increased knowledge of siblings' experiences of living with a seriously ill brother or sister, we can construct adequate support for these children based on their needs.  Aim: To describe the siblings' experiences of living with a seriously ill brother or sister. Method: A literature review based on 13 original articles, collected from two databases, published between 2013-2023. A thematic analysis was made based on Braun and Clarke's analysis model. Results: Three main themes emerged when compiling results: Dealing with oneself and one's feelings - describes the sibling's vulnerability and sense of isolation, a feeling of being overshadowed by their brother or sister's illness, where a strong desire to be seen, but an unwillingness to take place emerged, and support from the environment was appreciated. The feeling of understanding - describes that information and inclusion are appreciated, that they usually know when things are left unsaid and that they themselves are forced to read between the lines regarding what they see and what is said. The new normal - describes a change in situation and everyday life, where the family became increasingly important, but the roles within the family changed, and there was a constant presence of concern around the sick brother or sister. Conclusion: Nurses and other healthcare personnel should know and consider the sibling's emotional life and wishes in order to best support and help the sibling through the difficult time. In order to meet the Convention on the Rights of the Child, which is now law, this also applies to healthcare staff in adult care, as children who have palliative care needs are often cared for in adult clinics.