Life-limiting Conditions Research Articles

“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

ABSTRACT Background There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves. Method This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials. Results One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own. Conclusion The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

BackgroundActigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics.MethodsIn this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures’ concordance.ResultsDescriptively, and except for the number of waking episodes, the different measures’ estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02).ConclusionAgreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.

A framework for capacity enhancement of Rwandan nurse educators and preceptors facilitating nursing students to learn pediatric pain management

IntroductionIn low- and middle- income countries like Rwanda, children are most likely to suffer from painful and life-limiting conditions due to various factors predominant in these settings. Adequate pre-licensure pain management training can improve pain relief nursing practices. Educators and nurses in practice have a responsibility to teach the soon-to- be nurses for holistic competent nursing care of children, emphasizing the importance of and addressing child’s suffering, yet inconsistencies were reported in what was taught regarding pediatric pain management from a theoretical perspective by nurse educators as compared to their counterparts in clinical settings in Rwanda.DesignThis study applied a qualitative approach using group discussions based on nominal group technique (NGT) to develop and validate a conceptual framework supporting the capacity enhancement of nurse educators and preceptors facilitating students’ learning about pediatric pain management in Rwanda.MethodsNGT meetings were conducted with academic nurses (n = 8), nurse clinicians (n = 4), and nursing students (n = 2) during a 2-day workshop to identify strategies, discuss the relevance of each strategy and to agree on key concepts of a framework for improving the ability of nurse educators and preceptors to teach PPM to nursing students. After four weeks another round of NGT meetings were done with nursing faculty (n = 6), academic nurse leaders (n = 3), nurse preceptors (n = 2), clinical nurse leaders (n = 2), a nurse leader from a regulatory body (n = 1), and nursing student (n = 1) to validate the developed framework.FindingsFour main strategies corresponding to the key concepts were mapped in a framework. Participants had a consensual agreement on the importance of the developed framework, they confirmed its completeness and practicality. In addition, participants found that the developed framework is logical, and confirmed that it is applicable for its purpose.ConclusionThe developed framework presents an opportunity to respond to the gaps in nursing pain education in the context of limited resources settings such as Rwanda. It can also be applied in nursing practice and nursing research, aligning with the need of improving the quality of care of suffering children. Furthermore, the framework can be adapted and utilized to meet the needs of healthcare professionals other than nurses.Clinical relevanceStrategies are suggested to improve the ability of nurse educators and preceptors in clinical settings to facilitate the acquisition of pediatric pain management competencies by the next generation of nurses. Future Rwandan nurses could then use the competencies acquired to provide optimal health care to children with pain in the best way possible during their practices.

Social work practice in perinatal palliative care: an overview

ABSTRACT Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined.

‘People don’t realise how much their past experiences affect them in adulthood’: A qualitative study of adult siblings’ experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings’ perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children’s hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling’s mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships.

Supporting a family living with young-onset dementia: a case study

In the UK, it is estimated that people living with young-onset dementia (YOD) accounts for a small, but significant, number of the total population living with dementia. The diagnosis happens at an unexpected time in one's life, and as a life-limiting condition, there are implications for the whole family, including managing employment, finances and debt, supporting dependent children and accessing age-appropriate support services. YOD causes a disproportionate burden on family members and appropriate care services can be challenging to find. The case study discussed follows a family's journey from pre-diagnosis, to subsequently engaging with the Admiral Nurse Helpline and then an Admiral Nurse in the family's locality, and considers the issues and challenges faced by them.

Knowledge, attitude, and practice towards neonatal palliative care of medical and nursing staff in an Indian context: A web-based survey

Objectives: Neonatal palliative care (NPC) is a holistic and interdisciplinary approach towards newborns with life-limiting conditions and encompasses their physical, psychosocial, and spiritual care and the redressal of pain. This study was designed to determine the knowledge, attitude, and practices towards NPC by the medical and nursing staff involved in neonatal care. Material and Methods: It was a questionnaire-based prospective cross-sectional study done at a tertiary care hospital in India by collecting data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey which has 26 attitudinal questions on a Likert scale. Results: There were 87 participants including 58 doctors (66.7%) and 29 (33.3%) nurses. Almost all of the respondents agreed that palliative care was necessary in neonatal nursing and medical education; but less than half had received education for the same. There was an overall agreement in the organization, resources, and clinician subscale by both medical and nursing respondents. Conclusion: There were similarities and differences in perceptions of NPC between medical and nursing staff. Several facilitators and barriers of NPC were identified. Efforts should be taken to strengthen facilitators while simultaneously mitigating barriers.

Pilot study of paediatric regional lung function assessment via X-ray velocimetry (XV) imaging in children with normal lungs and in children with cystic fibrosis

IntroductionCystic fibrosis (CF) is a life-limiting autosomal recessive genetic condition. It is caused by mutations in the gene that encodes for a chloride and bicarbonate conducting transmembrane channel. X-ray velocimetry...

Put on the sidelines of palliative care: a qualitative study of important barriers to GPs’ participation in palliative care and guideline implementation in Norway

Background Demographic changes, the evolvement of modern medicine and new treatments for severe diseases, increase the need for palliative care services. Palliative care includes all patients with life-limiting conditions, irrespective of diagnosis. In Norway, palliative care rests on a decentralised model where patient care can be delivered close to the patient’s home, and the Norwegian guideline for palliative care describes a model of care resting on extensive collaboration. Previous research suggests that this guideline is not well implemented among general practitioners (GPs). In this study, we aim to investigate barriers to GPs’ participation in palliative care and implementation of the guideline. Methods We interviewed 25 GPs in four focus groups guided by a semi-structured interview guide. The interviews were recorded and transcribed verbatim. Data were analysed qualitatively with reflexive thematic analysis. Results We identified four main themes as barriers to GPs’ participation in palliative care and to implementation of the guideline: (1) different established local cultures and practices of palliative care, (2) discontinuity of the GP–patient relationship, (3) unclear clinical handover and information gaps and (4) a mismatch between the guideline and everyday general practice. Conclusion Significant structural and individual barriers to GPs’ participation in palliative care exist, which hamper the implementation of the guideline. GPs should be involved as stakeholders when guidelines involving them are created. Introduction of new professionals in primary care needs to be actively managed to avoid inappropriate collaborative practices. Continuity of the GP–patient relationship must be maintained throughout severe illness and at end-of-life.

Navigating the post-Dobbs landscape: ethical considerations from a perinatal perspective.

Restrictive abortion laws have impacts reaching far beyond the immediate sphere of reproductive health, with cascading effects on clinical and ethical aspects of neonatal care, as well as perinatal palliative care. These laws have the potential to alter how families and clinicians navigate prenatal and postnatal medical decisions after a complex fetal diagnosis is made. We present a hypothetical case to explore the nexus of abortion care and perinatal care of fetuses and infants with life-limiting conditions. We will highlight the potential impacts of limited abortion access on families anticipating the birth of these infants. We will also examine the legally and morally fraught gray zone of gestational viability where both abortion and resuscitation of live-born infants can potentially occur, per parental discretion. These scenarios are inexorably impacted by the rapidly changing legal landscape in the U.S., and highlight difficult ethical dilemmas which clinicians may increasingly need to navigate.

LIV Well when Life Is Limited: Technology to Support Independence at Home.

There has been significant growth in technologies and services creating 'care at home' ecosystems for people with life-limiting conditions such as dementia. Dementia is one of the leading causes of disability and loss of independence that causes a heavy burden for families and caregivers. There is a clear need to support independent living of people living with dementia and their caregivers. Health technologies can help to foster supported living and social connection. The LIV app, developed by Miroma Project Factory and piloted in collaboration with CSIRO, was designed to achieve these aims. Here we describe the development and functionality of the app and present the preliminary findings from the pilot trial.

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.

Experience With Medical Marijuana in a Pediatric Palliative Care Clinic: Case Report

Children receiving palliative care have life-limiting or life-threatening conditions, which include symptoms ranging from unpleasant to intolerable suffering. We describe three diverse cases of medical marijuana within ambulatory pediatric palliative care, highlighting use for spasticity, refractory seizures, and cancer-related symptoms. Included are caregiver perspectives of their child's experience with medical marijuana. This population has high potential for positive effects from medical marijuana therapy, particularly for maximizing quality of life.

Evaluation of paediatric palliative care ambulance plans: A retrospective study.

Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.

Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study

ObjectiveTo compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.DesignA qualitative case study method using semistructured...

Experiences regarding Home Care for Older Adults from the Viewpoint of Family, Paid Caregivers, Nurses, and Experts: A Qualitative Study

Home care (HC) is recommended for older adults who want to live at home as long as possible despite life-limiting conditions. It is more convenient and cost-effective than institutionalization and hospitalization. However, HC for older adults in Iran faces many challenges. The purpose of this study was to explore the perspectives of different stakeholders involved in HC for older adults about their experiences and suggestions for HC improvement. This qualitative study was conducted based on the explorative content analysis approach between 2021 and 2022 in Tabriz, Iran. The participants were selected using the purposeful sampling method, and the data were collected through in-depth semistructured personal interviews. A total of 27 individuals who participated in individual interviews were family members, HC workers (including nurses and unqualified paid caregivers), heads of counseling and nursing care at home centers, and experts who had clinical or research experience in the field of geriatric care. Collected data were categorized into three main themes: defects in home care governance, concern about the efficiency of home care, and caregivers’ job security concerns. These themes reflected the problems of HC, such as conflicts between multiple trustees, lack of evaluation and monitoring, inadequate competence and financial barriers of families and caregivers, and poor integration and coordination of services. Therefore, it is recommended to develop a national model for HC for Iranian older adults and allocation of different financial resources for HC, implementing quality improvement and evaluation tools, enhancing the training of caregivers, providing them with adequate compensation and benefits, and ensuring the safety and quality of services. These findings can inform the policymakers and planners of care services about the needs and challenges of this population and facilitate the collaboration among different stakeholders to provide better HC for older adults.

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care.

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents' own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents' contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions—a qualitative study

Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children’s perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally. Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children’s perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen’s phenomenology of practice. Methods: Twelve children with cancer or genetic conditions participated. Due to the children’s varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children’s perspectives, including interviews, interactions, descriptions of the children’s non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis. Results: The findings showed that the children’s attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items. Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children’s desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children’s agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child.

‘I really feel like I am ageing early’: an interpretative phenomenological analysis of the lived experience of young adults with life-limiting conditions (YALLC)

ObjectivesThis study aims to explore the lived experience of young adults with life-limiting conditions (YALLC) and how they perceive and navigate adulthood, to identify challenges and opportunities for improved care...

Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital.

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success. The hospital-based palliative care team included trained pediatric palliative care physicians, a nurse, and a counselor. There was a steady increase in monthly referrals. There were 110 referrals in total, including 89 (81%) deaths and 18 (16%) babies were alive at the time of final follow-up, 10 months after the pilot program was completed. The program addressed physical symptoms, including providing morphine, as well as psychosocial and spiritual concerns of families. A model of hospital-based palliative care for neonates can be implemented within NICUs in tertiary government hospitals in India. Neonatal palliative care programs should include partnerships with charitable organizations to support implementation costs and provide palliative care training, mentorship, and capacity-building support.