An Overview of Pediatric Palliative Care

Knapp, Caprice; Madden, Vanessa; Woodworth, Lindsey; Fowler‐Kerry, Susan

doi:10.1007/978-94-007-2570-6_1

Cited by 6 publications

(7 citation statements)

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“…1 In 2012, 6.6 million children died before their fifth birthday. 2 Providing compassionate end-of-life (EOL) care that is appropriate and in accordance with the patient's wishes is an essential component of nursing care.…”

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confidence: 99%

Nurses’ Perception of Supportive Behaviors in Providing Pediatric End-of-Life Care and Its Correlation With Their Demographic Factors

Banazadeh

Iranmanesh

Forozy

2015

Journal of Hospice & Palliative Nursing

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The kind of care that nurses provide for dying persons is influenced by their perceptions and attitudes toward death. Gaining an increased understanding of nurses' perceptions of changes that would facilitate appropriate end-of-life care is important to improve quality care. Using a translated modified version of The National Survey of Critical Care Nurses Regarding End-of-Life questionnaire, the correlation between 151 nurses' demographic factors and their perceptions of supportive behaviors' magnitude was assessed. The highest/lowest perceived supportive behavior magnitude scores belonged to items, respectively, ''providing a peaceful, dignified bedside scene for family once the child has died'' (5.75) in health care professionalYrelated category and ''letting the religious leader take primary care of the grieving family'' (1.08) in organizational-related category. Some nurses' demographic factors including family and close friends' death experience, number of dying children who were cared for, and previous education toward death and dying were positively correlated with perceived supportive behavior magnitude scores. This study revealed that nurses' personal and professional experience may affect their perceptions of supportive behaviors in providing end-of-life care. Some educational programs in raising nurses' self-awareness of their perceptions, accompanied by interventions, are required to improve pediatric end-of-life care.A child's death always results in heartache, grief, and suffering for families and communities. 1 In 2012, 6.6 million children died before their fifth birthday. 2 Providing compassionate end-of-life (EOL) care that is appropriate and in accordance with the patient's wishes is an essential component of nursing care. 3 According to Larson and Tobin, 4 supportive behaviors to providing EOL care are defined as any supportive issue that advocates the delivery of optimal EOL care services. A number of investigators have made an effort to contribute their research outcomes regarding supportive behaviors, interventions, programs, and resources that may improve EOL care for dying patients, which may reside in 3 areas: patientfamilyYrelated factors, health care professionalYrelated factors, and organizational-related factors. 5 The kind of care that nurses provide for dying patients is influenced by their perception and attitude toward death. 6 Gaining an increased understanding of the perceptions of critical care nurses of changes that would facilitate appropriate EOL care is important to ultimately improve the EOL care. 7 Some published researches have addressed supportive behaviors in providing EOL care as perceived by nurses in adult settings [8][9][10][11] and less in pediatric settings, 10(p99),12(p543),13(p95) No study was found that specifically assessed correlation between nurses' demographic characteristics and their perceived supportive behaviors in providing EOL care. However, some studies reported factors that contribute to nurses' attitudes toward death and dying including certain ...

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confidence: 99%

Nurses’ Perception of Supportive Behaviors in Providing Pediatric End-of-Life Care and Its Correlation With Their Demographic Factors

Banazadeh

Iranmanesh

Forozy

2015

Journal of Hospice & Palliative Nursing

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“…Palliative care in children in the Middle East is still in its early stages and there are many obstacles to its development, namely, lack of professional knowledge, inadequate support of policy-makers, and lack of access to opioids and financial resources. [ 21 51 ] Despite these challenges, results of this study showed that Jordan, due to the availability of various settings, had a desirable condition compared to the other countries. Having overcome the existing obstacles, Jordan managed to improve its position in palliative care ranking in the world.…”

Section: Discussionmentioning

confidence: 88%

“…The National Cancer Institute, Cairo University as the largest comprehensive cancer center launched the first palliative care service[ 19 ] on an outpatient basis for children with cancer in a 100-bed hospital in Cairo in late 2007 and in 2010, home care program was also added to it. [ 20 21 ] Furthermore, Foka charity in rural areas of Egypt provides level 1 and level 3 (combined) services to children with cancer. [ 22 ] These services are offered by a multidisciplinary team, including a specialist consultant on pediatric palliative care, two pediatric oncologists, pain management service, two specialist nurses, a cancer psychologist, and a social worker.…”

Section: Aterials and M Ethodsmentioning

confidence: 99%

Palliative care for children with cancer in the Middle East: A comparative study

Mojen

Rassouli

Eshghi

et al. 2017

Indian J Palliat Care

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Introduction:High incidence rates of childhood cancer and the consequent deaths in the Middle East is one of the major reasons for the need for palliative care in these countries. Using the experiences and innovations of the other countries can provide a pattern for the countries of the region and lead to the development of palliative care in children. Therefore, the aim of this study is to compare the status of pediatric palliative care in Egypt, Lebanon, Jordan, Turkey, and Iran.Materials and Methods:This is a comparative study in which the information related to pediatric palliative care system in the target countries (from 2000 to 2016) has been collected, summarized, and classified by searching in databases, such as “PubMed, Scopus, Google scholar, Ovid, and science direct.”Results:Palliative care in children in the Middle East is still in its early stages and there are many obstacles to its development, namely, lack of professional knowledge, inadequate support of policy-makers, and lack of access to opioids and financial resources. Despite these challenges, providing services at the community level, support of nongovernmental organizations (NGOs), using trained specialists and multi-disciplinary approach is an opportunity in some countries.Conclusion:Considering the necessity of the development of pediatric palliative care in the region, solutions such as training the human resources, integrating palliative care programs into the curriculum of the related fields, establishing facilitating policies in prescription and accessibility of opioids, providing the necessary support by policy-makers, doing research on assessment of palliative care quality, as well as NGOs' participation and public education are suggested.

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“…Nevertheless, various studies have reported ongoing issues for children at the end of life such as low accessibility to pediatric palliative care services [15], lack of communication between care professionals [16], insufficient resources and training [17], and absence of children-specific quality measures [11, 18]. Children globally lack access to supportive care measures [19], and while low access to palliative care is associated in general with low-income countries [20, 21], also high-income countries such as Canada can struggle with accessibility to supportive care due to, e.g., wide geography [22]. Challenges for supportive care for children at the end of life differ overall between high-, middle-, and low-income countries, with low-income country challenges often relating to the lack of resources and finances, and high-income countries focusing on improvement and continuity of care [22].…”

Section: Introductionmentioning

confidence: 99%

Influence of health interventions on quality of life in seriously ill children at the end of life: a systematic review protocol

et al. 2019

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Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life. Systematic review registration PROSPERO CRD42018105109 Electronic supplementary material The online version of this article (10.1186/s13643-019-1059-8) contains supplementary material, which is available to authorized users.

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An Overview of Pediatric Palliative Care

Cited by 6 publications

References 1 publication

Nurses’ Perception of Supportive Behaviors in Providing Pediatric End-of-Life Care and Its Correlation With Their Demographic Factors

Nurses’ Perception of Supportive Behaviors in Providing Pediatric End-of-Life Care and Its Correlation With Their Demographic Factors

Palliative care for children with cancer in the Middle East: A comparative study

Influence of health interventions on quality of life in seriously ill children at the end of life: a systematic review protocol

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