Palliative Care For Children Research Articles

Paediatric pain education for health care professionals.

Paediatric pain education for health care professionals.

O que o fisioterapeuta pode fazer pela criança em cuidados paliativos?

O que o fisioterapeuta pode fazer pela criança em cuidados paliativos?

Reumatologia infantil e cuidados paliativos pediátricos: conceituando a importância desse encontro

Reumatologia infantil e cuidados paliativos pediátricos: conceituando a importância desse encontro

A importância dos cuidados paliativos para crianças com doença terminal e a necessidade de considerar o papel dos distúrbios de sono nesse contexto

A importância dos cuidados paliativos para crianças com doença terminal e a necessidade de considerar o papel dos distúrbios de sono nesse contexto

Integration of Pediatric Palliative Care in Children with Cancer: A Systematic Review

In Colombia, cancer is the second cause of mortality in children. The city of Santiago de Cali has one of the biggest Cancer Infant Units in the country, but currently the integration of Pediatric Palliative Care (PPC) is done at the end of life. It is necessary to carry out a systematic review that supports the creation of a program of PPC that is integrated from the moment of the diagnosis of cancer. To compare an early vs late integration of the Palliative care team in children with cancer, establish the viability of the program and describe the acceptance from the patients, family and oncologist when PPC is introduced at the same time as curative treatment. Systematic review. PRISMA methodology. Four databases were searched. English and Spanish articles published between 2007 and 2017 were included. The search terms include key words and terms MeSH: intervention, palliative care, cancer, pediatric oncology. Descriptive statistics and narrative synthesis are used to summarize the findings. 252 studies were identified. Filters were used as: Access to the complete text, repeat articles, publication between 2007 and 2017, Spanish and English language. 25 articles were revised in total, of different methodologies like controlled clinical trials, descriptive, and systematic reviews. 20 articles were included for discussion. The viability of establishing CP programs that intervene early in patients diagnosed with cancer is confirmed. This model of attention integrated into the curative treatment, represents a positive impact in the control of symptoms, improvement of the quality of life, improvement of attention at the end of life, decrease of invasive end-of-life interventions, among others.

Palliative Care for Children with Central Nervous System Malignancies

Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary pediatric palliative care.

Inspiration, innovation and integration: highlights from the third ICPCN conference on children's palliative care, 30 May to 2 June 2018, Durban, South Africa.

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference—inspiration, innovation and integration—brought together 250 participants from 41 countries and was held in conjunction with local partners—Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children’s palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children’s palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children’s palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six ‘Meet the expert sessions’ 100 poster presentations and the South African Premier of the film ‘Hippocratic: 18 Experiments in gently shaking the world’. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children’s palliative care globally.

Challenges of palliative care in children with inborn metabolic diseases

BackgroundOur objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team.ResultsBetween 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0–24), median duration of care 352 days (3–2248) and median number of home visits 13 (1–80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0–12), antiepileptics were given most frequently.Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms.Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age).Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU.ConclusionsAbout 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.

Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience.

Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that >80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.

Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.

When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which involved a day service with occasional overnight trips. To evaluate the pilot project. Three focus groups made up of key stakeholders (young people, their parents and staff) were set up and analysed using an adopted thematic analysis framework. The participants consisted of three young people, seven parents and six staff members. Participants described the transition period as a difficult time for both young people and their families, with a perceived lack of adult services available. All groups agreed that the pilot had a positive impact on young people and their families and all were keen for the project to continue. This pilot models a service that could be adopted by other organisations in order to aid the transition between child and adult hospice services, with further potential for application in mental health and special needs services.

“Time for a Promotion? No, It’s Not for Me…” How Caring for Children with Life-Limiting Conditions Affects Health Care Assistants’ Career Decisions

This paper discusses the relationship between the level and experience of care provided by Health Care Assistants (HCAs) to children in palliative care and the HCAs’ views about their career progression. An ethnographic approach was taken to explore the reasoning that informs Health Care Assistants’ choices about whether to pursue a career pathway into nursing. The author, a medical student, conducted the study using participant observation while working as a volunteer for one year in a Children’s Hospice in England. The data presented and analysed here were collected through unstructured conversations with the HCAs. It was found that the main reason why HCAs declined opportunities to progress in their career to nursing was their fear of not being able to be emotionally available to the children with whom they worked. HCAs also wanted to avoid working in hospital settings, where they perceived that they would have to trade off emotional involvement in caring for patients against career advancement. The decision to pass up a promotion, in some cases several times, is not easy, especially when pay may be substantially higher. This study shows that participants’ job satisfaction and valuing of having time to provide compassionate care were the main motivations to avoid progressing from HCA to nursing roles.

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review.

Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n = 914], patients [n = 25], and siblings [n = 40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.

Anticipatory prescribing and advance care planning in palliative care for children and young people

The ability to manage the distressing symptoms of life-limiting conditions in children outside of hospital is essential if families are to receive care in their place of choice. A key tool to support practitioners achieve this is the advance care plan. Issues of polypharmacy and comorbidity are common in this population. Many medicines used in children's palliative care are prescribed off-label. Assessment, anticipation and management of symptoms should be child-focused, family-centred, holistic and interdisciplinary, and should be considered a continual process rather than as a single event. In this context, there are a number of barriers to effective interdisciplinary working. Practitioners must ensure effective relationships and communication between health professionals, teams and across organisational boundaries, where individuals work together to share knowledge, skills and expertise. Practitioners must also have access to training and ongoing support and supervision in order to practise safely.

Application of the Association for Children's Palliative Care (ACT) criteria at a pediatric reference institution in the Colombian Caribbean

To assess the existence of a population susceptible to pediatric palliative care using the classification of the Association for Children's Palliative Care (ACT). Descriptive, retrospective study. The data included in clinical records of the pediatric population aged 0-18 years and attended at the Hospital Infantil Napoleón Franco Pareja in the city of Cartagena, Colombia, were reviewed. 2 718 patients were included and classified according to ACT groups in group I with 462 patients; group II with 61 patients; group III with 29 patients; and group IV with 1 195, representing 4.5% of the total population attended by the institution. The study found a population susceptible to pediatric palliative care, which requires establishing measures to complement and provide comprehensive care.

To assess the need of palliative care in children with life limiting diseases using Paediatric Palliative Screening Scale (PaPaS Scale)

To assess the need of palliative care in children with life limiting diseases using Paediatric Palliative Screening Scale (PaPaS Scale)

Palliative Care for Children in Hospital: Essential Roles.

Palliative care for children in pediatric hospitals is a vital part of the network of services supporting children with severe illness. This has been recognized, with a trend over the past decade for an increased number of pediatric palliative care (PPC) services established in pediatric hospitals. The inpatient team is in the unique position of influencing the early identification of children and their families, across the age and diagnostic spectrum, which could benefit from palliative care. These services have an opportunity to influence the integration of the palliative approach throughout the hospital, and in so doing, have the capacity to improve many aspects of care, including altering an increasingly futile and burdensome treatment trajectory, and ensuring improved symptom (physical and psychological) management.

Impact of Educational Training in Improving Skills, Practice, Attitude, and Knowledge of Healthcare Workers in Pediatric Palliative Care: Children's Palliative Care Project in the Indian State of Maharashtra.

Background:The “Children's Palliative Care Project” was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions. This study evaluates its education and training component through a questionnaire.Materials and Methods:A cross-sectional survey was carried out pre-/post-training among 258 doctors, nurses, social workers, and counselors at three sites in Maharashtra in March 2015. Descriptive statistics were used for data analysis.Results:Sixty-two participants responded. Posttraining, doctors and the nurses had a better level of knowledge, skill set, and attitude; whereas social workers and counselors fared better with prevailing care practices. Participants advocated using morphine only when other analgesics had failed and suggested ways for better service delivery of care.Conclusion:The study gives a rough idea of the prevailing practice of pediatric palliative care among the health-care workers (who participated in the survey) and suggests practical ways to improve it.

Parental Knowledge and Opinions on Palliative Care for Children

Parental Knowledge and Opinions on Palliative Care for Children

Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

ContextPediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. ObjectivesThis study examines the psychometrics of and respondents' perceptions about the PCNeeds. MethodsParents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life–Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. ResultsThe 93 respondents were predominantly female (n = 69, 74%); white (n = 79, 85%); college graduates (n = 71, 76%); and married or partnered (n = 75, 81%). Internal reliability was acceptable (Cronbach's α = 0.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from −0.36 to −0.51). The most frequently cited need not addressed by our survey was sibling impact (n = 17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n = 63) rated completion of the survey as “easy” or “very easy.” ConclusionInitial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.

Individualised advance care planning in children with life-limiting conditions

IntroductionIn 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline ‘Palliative care for children’. To promote implementation in daily practice and hereby improve quality of paediatric palliative care,...