Indian Journal of Palliative Care
Open access journal 
  Print this page Email this page   Small font sizeDefault font sizeIncrease font size Users online: 326  
     Home | About | Feedback | Login 
  Current Issue Back Issues Editorial Board Authors and Reviewers How to Subscribe Advertise with us Contact Us Analgesic Prescription  
  Navigate Here 
 Search
 
  
 Resource Links
  »  Similar in PUBMED
 »  Search Pubmed for
 »  Search in Google Scholar for
 »Related articles
  »  Article in PDF (776 KB)
  »  Citation Manager
  »  Access Statistics
  »  Reader Comments
  »  Email Alert *
  »  Add to My List *
* Registration required (free)  

 
  In this Article
 »  Abstract
 » Introduction
 »  Materials and Me...
 » Results
 » Discussion
 » Conclusion
 »  References
 »  Article Figures
 »  Article Tables

 Article Access Statistics
    Viewed5968    
    Printed327    
    Emailed4    
    PDF Downloaded212    
    Comments [Add]    
    Cited by others 4    

Recommend this journal

 


 
Table of Contents 
ORIGINAL ARTICLE
Year : 2011  |  Volume : 17  |  Issue : 3  |  Page : 202-209

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals


Department of Physiotherapy, Kasturba Medical College, Manipal University, Mangalore, Karnataka, India

Date of Web Publication28-Jan-2012

Correspondence Address:
Senthil P Kumar
Department of Physiotherapy, Kasturba Medical College, Manipal University, Mangalore, Karnataka
India
Login to access the Email id

Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0973-1075.92337

Rights and Permissions

 » Abstract 

Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence.
Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care.
Settings and Design: This was a systematic review of palliative care journals.
Materials and Methods: Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs.
Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206).
Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.


Keywords: Evidence-based pediatric palliative care, Journal reporting, Publication trend, Research


How to cite this article:
Kumar SP. Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care 2011;17:202-9

How to cite this URL:
Kumar SP. Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care [serial online] 2011 [cited 2019 Nov 19];17:202-9. Available from: http://www.jpalliativecare.com/text.asp?2011/17/3/202/92337



 » Introduction Top


The World Health Organization defines palliative care for children as "the active total care of the child's body, mind and spirit...also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease." [1] Pediatric palliative care is concerned with the medical, psychosocial, spiritual, and economic needs of patients and their families, providing complex patient care solutions involving all aspects of the healthcare system, from hospital to hospice, to community, and to home, and it involves an interdisciplinary team of caregivers. [2]

Four different categories of childhood diseases have been identified by the Association for Children with Life-Threatening or Terminal Conditions (ACLTC) and the Royal College of Pediatrics and Child Health (RCPCH): (1) life-threatening conditions for which curative treatment may be feasible but can fail, where palliative care is provided together with attempts at curative treatment (cancer, irreversible organ failure); (2) diseases which are life-threatening at an early age, where appropriate treatment may prolong life and provide an adequate quality of life (cystic fibrosis); (3) progressive conditions without curative treatment options, where treatment is exclusively palliative (some chromosomal diseases, muscular dystrophy, rare metabolic diseases); and (4) nonprogressive, irreversible conditions, with complex healthcare needs, that give rise to many complications and premature death (spinal muscular atrophy, severe cerebral palsy, brain or spinal cord injuries due to trauma or infection). [3],[4] The predominant primary clinical conditions encountered in a pediatric palliative care setting were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). [5]

Improving the care provided to these children is likely to have the largest impact on quality of life and longevity. [6] The low prevalence of most severe pediatric diseases also makes it difficult to evaluate the effectiveness of new treatment modalities; multicenter trials or long enrollment periods are usually required to obtain a large enough patient sample to conduct the necessary randomized controlled trials or cohort studies. [6] Another challenge encountered when measuring quality of care for children is that, in most cases, they depend on adults to both obtain care and report on the outcomes of that care. [6],[7]

Palliative care is a multidisciplinary profession and is being recognized as a separate field on its own. Evidence-based palliative care (EBPC) involved integrating effective research findings with clinical expertise and patient preferences toward better individualized provision of palliative care for patients. [8] One of the main causes for the lack of quality in provided care for the pediatric population in an era of evidence-informed/ evidence-based practice is the lack of adequate research evidence [9] and this may be due to the following possible reasons: lesser studies being conducted on pediatric palliative care, publication of lesser number of studies, ethical issues [10] and reporting characteristics of such studies. Despite an increasing global need for high-quality pediatric palliative care, [11] 65.6% of countries had no known activities reported on pediatric palliative care around the world. [12] Evidence-based pediatric palliative care (EBPPC) demands palliative healthcare professionals to have updated knowledge of current research evidence (commonly obtained from palliative care journals) for effective translation into palliative care for the pediatric population.

Previously published studies on analysis of palliative care journals were on reporting of moral problems (ethical issues), [13] euthanasia, [14] chaplains and community-based clergy, [15],[16] and, religion and spirituality [16],[17],[18] and cancer pain. [19] The objective of this paper was to perform a quantitative analysis of research articles on pediatric palliative care published in palliative care journals over the past 5 years.


 » Materials and Methods Top


Search strategy and criteria

Journals indexed in MEDLINE with name "palliative" were included and searched from 2006 till 2010 for English papers with "paediatric" or "children" in the title of the paper.

Data synthesis

The total number of articles in all the selected journals was taken as N. The number of included articles (N1 ) based on search criteria was compared with number of articles that had "paediatric" or "children" in the title (NR ) to obtain reporting rates (N1 /N%) for each journal. Such an estimate provided reporting rate (RR) for pediatric palliative care. The journals were categorized broadly into multidisciplinary, medical, nursing, and other (social work) categories of palliative care journals. The included studies were then categorized into original articles and review articles. The original articles were then again grouped into qualitative and quantitative studies and both of them were then subgrouped based upon study designs. The number of articles reported in each of the final subgroups was computed. The procedure of data synthesis is explained in the schematic flowchart [Figure 1].
Figure 1: Schematic flowchart for data synthesis used in this study

Click here to view


Further, the articles on pediatric palliative care were grouped into the practice-education-research-administration (PERA) professional model of analysis: education - on knowledge, training, curriculum (child, parents/caregivers, physicians, nurses, other healthcare professionals, and interdisciplinary), practice - application, implementation, treatment/intervention (diagnosis, therapy, and prognosis), and research - studies on the nature and generation of evidence.

Data analysis

Descriptive analysis using frequencies for the number of studies with respective percentiles was used for reporting characteristics and was done using 95% confidence interval by SPSS for Windows version 11.5 (SPSS Inc., IL, USA). Comparisons between journals and article categories were done visually.


 » Results Top


Overall journals' characteristics

The study included 12 palliative care journals with a total number of 3634 articles: AJHPC, Am J Hosp Palliat Care; BMCPC, BMC Palliat Care; COSPC, Curr Opin Support Palliat Care; IJPC, Indian J Palliat Care; IJPN, Int J Palliat Nurs; JHPN, J Hosp Palliat Nurs; JPPCP, J Pain Palliat Care Pharmacother; JPC, J Palliat Care; JPM, J Palliat Med; JSWELPC, J Soc Work End Life Palliat Care; PM, Palliat Med; and PSC, Palliat Support Care. There were 97 articles on pediatric palliative care thus making the overall reporting rate to be 2.66% [Figure 2].
Figure 2: Overall prevalence of reporting pediatric palliative care (reporting rate) in all the palliative care journals

Click here to view


Individually, AJHPC had 16 articles, [20],[21],[22],[23],[24],[25],[26],[27],[28],[29],[30],[31],[32],[33],[34],[35] BMCPC had 0 article, COSPC had 0 article, IJPC had 3 articles, [36],[37],[38] IJPN had 12 articles, [39],[40],[41],[42],[43],[44],[45],[46],[47],[48],[49],[50] JHPN had 1 article, [51] JPC had 11 articles, [52],[53],[54],[55],[56],[57],[58],[59],[60],[61],[62] JPM had 35 articles, [63],[64],[65],[66],[67],[68],[69],[70],[71],[72],[73],[74],[75],[76],[77],[78],[79],[80],[81],[82],[83],[84],[85],[86],[87],[88],[89],[90],[91],[92],[93],[94],[95],[96],[97] JPPCP had 1 article, [98] JSWELPC had 5 articles, [99],[100],[101],[102],[103] PM had 9 articles, [104],[105],[106],[107],[108],[109],[110],[111],[112] and PSC had 4 articles [113],[114],[115],[116] on "pediatric palliative care." Also refer to [Table 1] for respective reporting rates for journals and [Figure 3] for the comparison of number of "pediatric" articles and "nonpediatric" articles between the journals.
Table 1: Comparison of reporting rates of palliative care journals on pediatric palliative care


Click here to view


Of the selected journals, seven were multidisciplinary (AJHPC, BMCPC, COSPC, IJPC, JPC, JPPCP, PSC), two were medical (JPM, PM), two were nursing (IJPN, JHPN), and one was other (social work, JSWEOLPC). The reporting rate for articles in the social work-related journal was highest at 7.5% (5/66) followed by multidisciplinary journals at 2.72% (34/1246), and nursing journals at 2.96% (13/438) [Figure 4].
Figure 3: Comparison of reporting rates of "pediatric" articles between palliative care journals.
AJHPC, Am J Hosp Palliat Care; BMCPC, BMC Palliat Care; COSPC, Curr Opin Support Palliat Care; IJPC, Indian J Palliat Care; IJPN, Int J Palliat Nurs; JHPN, J Hosp Palliat Nurs; JPPCP, J Pain Palliat Care Pharmacother; JPC, J Palliat Care; JPM, J Palliat Med; JSWELPC, J Soc Work End Life Palliat Care; PM, Palliat Med; and PSC, Palliat Support Care.


Click here to view
Figure 4: Comparison of reporting rates between multidisciplinary, medical, nursing, and other palliative care journals

Click here to view


Practice, education, research and administration

Of the total 97 articles on pediatric palliative care, there were 55 articles on clinicalpractice, [20],[22],[29],[33],[35],[36],[37],[38],[39],[40],[42],[44],[45],[46],[47],[48],[49],[50],[52],[53],[55],[57],[59],[60],[63],[64],[65],[66],[67],[68],[70],[74],[75],[77],[80],[81],[83],[84],[85],[86],[92],[95],[96],[97],[98],[99],[100],[103],[106],[107],[108],[109],[ 110],[112],[113] 8 articles on education, [30],[69],[73],[76],[87],[88],[90],[114] 7 articles on research, [24],[28],[43],[56],[61],[104],[105] and 27 articles on administration. [21],[23],[25],[26],[27],[31],[32],[34],[41],[51],[54],[58],[62],[71],[72],[78],[79],[82],[89],[91],[93],[94],[101],[102],[111],[115],[116] The relative reporting prevalence for the four categories is provided in [Figure 5].
Figure 5: Distribution of categories of articles on practice, education, research, and administration (N, %) among pediatric palliative care articles

Click here to view


Of the 55 articles on clinical practice, 40 were original articles [20],[29],[33],[35],[37],[39],[40],[42],[45],[46],[48],[52], [57],[59],[60],[63],[64],[65],[66],[68],[70],[74],[75],[77],[80],[83],[84],[85],[97],[98],[99],[100],[103],[106],[107],[108],[110],[112],[113] and 15 were review articles. [22],[36],[38],[44],[47],[49],[53],[55],[67],[81],[86],[92],[95],[96],[109] There were six original articles [69],[73],[76],[87],[90],[114] and two review articles [30],[88] among the eight articles on education, and two original articles, [56] and six review articles [24],[28],[43],[61],[104],[105] among seven articles on research, respectively. Of the 27 articles on administration, there were 15 original articles [21],[23],[58],[71],[72],[78],[79],[82],[94],[101],[102],[111],[115],[116] and 12 review articles. [25],[26],[31],[32],[34],[41],[51],[54],[62],[89],[91],[93] The comparison of article types between four categories of pediatric palliative care articles is provided in [Figure 6].
Figure 6: Comparison of types of articles among the four pediatric palliative care article categories

Click here to view


The article subcategorization and respective prevalence rates among the pediatric palliative care articles are shown in [Table 2]. There were 46 studies that used qualitative methods [21],[23],[33],[37],[39],[40],[42],[45],[46],[48],[56],[58],[59],[60],[63],[64],[65],[66],[68],[69],

[71],[72],[73],[76],[78],[79],[82],[83],[88],[94],[97],[99],[100],[102],[103],[106],[107],[110],[111],[113],[114],[115],[116]
and 17 studies that used quantitative methods [20],[29],[35],[52],[57],[70],[74],[75],[77],[80],[84],[85],[87],[90],[98],[108],[112] among the 63 original articles. Among the 34 review articles, 33 articles were narrative reviews [22],[24],[25],[26],[27],[28],[30],[31],[32],[34],[36],[38],[41],[43],[44],[47],[49],[50],[51],[53],[54],[55],[61],[62],[67],[81],[86],[89],[91],[92],[93],[95],[96],[104],[109] and 1 was a systematic review. [105]
Table 2: Characteristics of articles on pediatric palliative care in terms of their type of article, method of research, and study design

Click here to view


[Figure 7] showed the comparison of qualitative and quantitative studies based upon the study designs.
Figure 7: Comparison between qualitative and quantitative types of original articles for reporting rates of different study designs on pediatric palliative care. RCT, randomized clinical trial; NRCT, non-randomized clinical trial; CS, cohort study; CCS, case-control study; CSS, cross-sectional study; CR, case report

Click here to view



 » Discussion Top


This study is essentially the first of its kind of a review of palliative care journals utilizing a systematic approach to quantitatively identify reporting characteristics of articles on pediatric palliative care. This study included 12 palliative care journals. The previous authors Hermsen and ten Have reviewed 12 palliative care journals from 1984 to 1999, [13],[14] found reporting rate of 12% for ethical issues (458 articles) and euthanasia rate was unreported (75 articles). Hermsen and ten Have [16] reviewed 12 journals from 1984 to 2002 and found a reporting rate of 2% for 80 articles on spirituality, pastoral care, and religion. Flanelly et al.[15] reviewed three palliative care journals from 1990 to 1999 and they found a reporting rate of 5.6% (47/838) for articles on the role of chaplains and clergy. Kumar [19] found a reporting rate of 5.6% for cancer pain articles in 19 palliative care journals. Why this study found a much smaller reporting rate could only be due to the relatively lesser emphasis given on pediatric population, as indicated by earlier authors. This study included journals as they are indexed in MEDLINE since it is the common database for evidence search, and the past 5 years of analysis provided the information trend on reporting rates.

The study found some interesting observations - some expected, some rather unexpected. The two unexpected observations include the following: there were higher reporting rates among social work-related and nursing palliative care journals which may be due to the lesser number of journals in respective categories, and no single randomized clinical trial (either qualitative or quantitative) or systematic review was found. The lack of systematic reviews and randomized clinical trials virtually undermines the current EBPPC since they are ranked the highest in hierarchy among the levels of evidence.

Healthcare professionals need to be aware of the relatively lesser reporting of pediatric palliative care articles in the palliative care journal literature and should shoulder the responsibility to foster better number of reporting high-quality research on the pediatric population for EBPPC. In future, such reviews could be performed with quality appraisal and identify the quality of reporting pediatric palliative care articles. Also, reviews from other related journals like pediatric journals and medical journals may yield different results. The comparison of reporting characteristics between journals based on their specialty would direct clinicians to find research appropriate to answer their relevant clinical questions during EBPPC.


 » Conclusion Top


The overall 5-year prevalence in reporting of articles on pediatric palliative care was low, only 2.66% among the 12 palliative care journals reviewed in this study. There were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care, and further high-quality clinical trials are required to base clinical decisions for pediatric palliative care.

 
 » References Top

1.Abu-Saad Huijer H. Pediatric palliative care.State of the art. J Med Liban 2008;56:86-92.  Back to cited text no. 1
    
2.Benini F, Spizzichino M, Trapanotto M. Pediatric palliative care. Italian J Pediatr 2008;34:4.  Back to cited text no. 2
    
3.Michelson KN, Steinhorn DM. Pediatric end-of-life issues and palliative care. Clin Pediatr Emerg Med 2007;8:212-9.  Back to cited text no. 3
    
4.Klick JC, Hauer J. Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 2010;40:120-51.  Back to cited text no. 4
    
5.Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al. Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics 2011;127:1094-101.  Back to cited text no. 5
    
6.Mangione-Smith R, McGlynn EA. Assessing the quality of healthcare provided to children. Health Serv Res 1998;33:1059-90.  Back to cited text no. 6
    
7.Shaller D. Implementing and using quality measures for children's health care: Perspectives on the state of the practice. Pediatrics 2004;113:217-27.  Back to cited text no. 7
    
8.Lunder U, Sauter S, Fürst CJ. Evidence-based palliative care: Beliefs and evidence for changing practice. Palliat Med 2004;18:265-6.  Back to cited text no. 8
    
9.Griebsch I, Coast J, Brown J. Quality-adjusted life-years lack quality in pediatric care: A critical review of published cost-utility studies in child health. Pediatrics 2005;115:e600-14.  Back to cited text no. 9
    
10.Rapoport A. Addressing ethical concerns regarding pediatric palliative care research. Arch Pediatr Adolesc Med 2009;163:688-91.  Back to cited text no. 10
    
11.Wolfe J. Recognizing a global need for high quality pediatric palliative care. Pediatr Blood Cancer 2011;57:187-8.  Back to cited text no. 11
    
12.Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, et al. Pediatric palliative care provision around the world: A systematic review. Pediatr Blood Cancer 2011;57:361-8.  Back to cited text no. 12
    
13.Hermsen MA, ten Have HA. Moral problems in palliative care journals. Palliat Med 2001;15:425-31.  Back to cited text no. 13
    
14.Hermsen MA, ten Have HA. Euthanasia in palliative care journals. J Pain Symptom Manage 2002;23:517-25.  Back to cited text no. 14
    
15.Flannelly KJ, Weaver AJ, Smith WJ, Oppenheimer JE. A systematic review on chaplains and community-based clergy in three palliative care journals: 1990-1999. Am J Hosp Palliat Care 2003;20:263-8.  Back to cited text no. 15
    
16.Hermsen MA, ten Have HA. Pastoral care, spirituality, and religion in palliative care journals. Am J Hosp Palliat Care 2004;21:353-6.  Back to cited text no. 16
    
17.Flannelly KJ, Weaver AJ, Costa KG. A systematic review of religion and spirituality in three palliative care journals, 1990-1999. J Palliat Care 2004;20:50-6.  Back to cited text no. 17
    
18.Puchalski CM, Kilpatrick SD, McCullough ME, Larson DB. A systematic review of spiritual and religious variables in Palliative Medicine, American Journal of Hospice and Palliative Care, Hospice Journal, Journal of Palliative Care, and Journal of Pain and Symptom Management. Palliat Support Care 2003;1:7-13.  Back to cited text no. 18
    
19.Kumar SP. Reporting characteristics of cancer pain: A systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care2011;17:57-66.  Back to cited text no. 19
    
20.Randall V, Cervenka J, Arday D, Hooper T, Hanson J. Prevalence of life-threatening conditions in children. Am J Hosp Palliat Care 2010;28:310-5.  Back to cited text no. 20
    
21.Byrne M, Tresgallo M, Saroyan J, Granowetter L, Valoy G, Schechter W. Qualitative analysis of consults by a pediatric advanced care team during its first year of service. Am J Hosp Palliat Care 2011;28:109-17.  Back to cited text no. 21
    
22.Rogers SK, Gomez CF, Carpenter P, Farley J, Holson D, Markowitz M, et al. Quality of life for children with life-limiting and life-threatening illnesses: Description and evaluation of a regional, collaborative model for pediatric palliative care. Am J Hosp Palliat Care 2011;28:161-70.  Back to cited text no. 22
    
23.Irola Moya JC, Garro Morales M. Pediatric palliative care, Costa Rica's experience. Am J Hosp Palliat Care 2010;27:456-64.  Back to cited text no. 23
    
24.Knapp C, Madden V. Conducting outcomes research in pediatric palliative care. Am J Hosp Palliat Care 2010;27:277-81.  Back to cited text no. 24
    
25.Jones PM, Carter BS. Pediatric palliative care: Feedback from the pediatric intensivist community. Am J Hosp Palliat Care 2010;27:450-5.  Back to cited text no. 25
    
26.Knapp C. e-Health in pediatric palliative care. Am J Hosp Palliat Care 2010;27:66-73.  Back to cited text no. 26
    
27.Knapp CA, Contro N. Family support services in pediatric palliative care. Am J Hosp Palliat Care 2009;26:476-82.  Back to cited text no. 27
    
28.Knapp CA. Research in pediatric palliative care: Closing the gap between what is and is not known. Am J Hosp Palliat Care 2009;26:392-8.  Back to cited text no. 28
    
29.Knapp C, Madden V, Wang H, Curtis C, Sloyer P, Shenkman E. Music therapy in an integrated pediatric palliative care program. Am J Hosp Palliat Care 2009;26:449-55.  Back to cited text no. 29
    
30.Wood I. An educational program in a pediatric hospice setting. Am J Hosp Palliat Care 2009;26:209-12.  Back to cited text no. 30
    
31.Knapp CA, Thompson LA, Vogel WB, Madden VL, Shenkman EA. Developing a pediatric palliative care program: Addressing the lack of baseline expenditure information. Am J Hosp Palliat Care 2009;26:40-6.  Back to cited text no. 31
    
32.Zinner SE. The use of pediatric advance directives: A tool for palliative care physicians. Am J Hosp Palliat Care 2008;25:427-30.  Back to cited text no. 32
    
33.Sheetz MJ, Bowman MA. Pediatric palliative care: An assessment of physicians' confidence in skills, desire for training, and willingness to refer for end-of-life care. Am J Hosp Palliat Care 2008;25:100-5.  Back to cited text no. 33
    
34.Carroll JM, Santucci G, Kang TI, Feudtner C. Partners in pediatric palliative care: A program to enhance collaboration between hospital and community palliative care services. Am J Hosp Palliat Care 2007;24:191-5.  Back to cited text no. 34
    
35.Zwerdling T, Hamann KC, Kon AA. Home pediatric compassionate extubation: bridging intensive and palliative care. Am J Hosp Palliat Care 2006;23:224-8.  Back to cited text no. 35
    
36.Kangethe S. The dangers of involving children as family caregivers of palliative home-based-care to advanced HIV/AIDS patients. Indian J Palliat Care 2010;16:117-22.  Back to cited text no. 36
    
37.Seth T. Communication to pediatric cancer patients and their families: A cultural perspective. Indian J Palliat Care 2010;16:26-9.  Back to cited text no. 37
[PUBMED]  Medknow Journal  
38.Namrata R, Ramamani P, Saroja G. Pain management in pediatric age group. Indian J Palliat Care 2009;15:84-5  Back to cited text no. 38
    
39.Knapp C, Madden V, Wang H, Curtis C, Sloyer P, Shenkman E. Factors affecting decisional conflict for parents with children enrolled in a paediatric palliative care programme. Int J Palliat Nurs 2010;16:542-7.  Back to cited text no. 39
    
40.Menezes A. Moments of realization: Life-limiting illness in childhood--perspectives of children, young people and families. Int J Palliat Nurs 2010;16:41-7.  Back to cited text no. 40
    
41.Popplestone-Helm SV, Helm DP. Setting up a support group for children and their well carers who have a significant adult with a life-threatening illness. Int J Palliat Nurs 2009;15:214-21.  Back to cited text no. 41
    
42.Metcalfe A, Pumphrey R, Clifford C. Children affected by genetic conditions in end-of-life care. Part 2: findings and discussion. Int J Palliat Nurs 2009;15:22-8.  Back to cited text no. 42
    
43.Metcalfe A, Pumphrey R, Clifford C. Children affected by genetic conditions in end-of-life care. Part 1: Development of a study. Int J Palliat Nurs 2008;14:596-601.  Back to cited text no. 43
    
44.Kennedy C, McIntyre R, Worth A, Hogg R. Supporting children and families facing the death of a parent: Part 1. Int J Palliat Nurs 2008;14:162-8.  Back to cited text no. 44
    
45.Kennedy C, McIntyre R, Worth A, Hogg R. Supporting children and families facing the death of a parent: Part 2. Int J Palliat Nurs 2008;14:230-7.  Back to cited text no. 45
    
46.Tuffrey C, Finlay F, Lewis M. The needs of children and their families at end of life: An analysis of community nursing practice. Int J Palliat Nurs 2007;13:64-71.  Back to cited text no. 46
    
47.Corkin DA, Price J, Gillespie E. Respite care for children, young people and families--are their needs addressed? Int J Palliat Nurs 2006;12:422-7.  Back to cited text no. 47
    
48.McCluggage HL. Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff. Int J Palliat Nurs 2006;12:254-8.  Back to cited text no. 48
    
49.Maunder EZ. Palliative care for children and young people: A community paediatric nursing perspective. Int J Palliat Nurs 2006;12:329-33.  Back to cited text no. 49
    
50.Maunder EZ. Emotion work in the palliative nursing care of children and young people. Int J Palliat Nurs 2006;12:27-33.  Back to cited text no. 50
    
51.Lindley L, Mark B, Lee SY. Providing hospice care to children and young adults: A descriptive study of end-of-life organizations. J Hosp Palliat Nurs 2009;11:315-23.  Back to cited text no. 51
    
52.Vaillancourt R, Collins M, Vadeboncoeur C, Jacob P, Graham N, Foster D, et al. Successful treatment of a seizure disorder with chronic high-dose chloral hydrate: A pediatric case report. J Palliat Care 2010;26:311-3.  Back to cited text no. 52
    
53.Siden H, Tucker T, Derman S, Cox K, Soon GS, Hartnett C, et al. Pediatric enteral feeding intolerance: A new prognosticator for children with life-limiting illness? J Palliat Care 2009;25:213-7.  Back to cited text no. 53
    
54.Knapp C, Madden V, Marston J, Midson R, Murphy A, Shenkman E. Innovative pediatric palliative care programs in four countries. J Palliat Care 2009;25:132-6.  Back to cited text no. 54
    
55.Birnkrant DJ, Noritz GH. Is there a role for palliative care in progressive pediatric neuromuscular diseases? The answer is "Yes! J Palliat Care 2008;24:265-9.  Back to cited text no. 55
    
56.Steele R, Bosma H, Johnston MF, Cadell S, Davies B, Siden H, et al. Research priorities in pediatric palliative care: A Delphi study. J Palliat Care 2008;24:229-39.  Back to cited text no. 56
    
57.Cantwell-Bartl AM, Tibballs J. Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: Implications for medical counselling, psychological counselling, and palliative care. J Palliat Care 2008;24:76-84.  Back to cited text no. 57
    
58.Ens CD, Chochinov HM, Bérard JL, Harlos MS, Stenekes SJ, Wowchuk SM. Pediatric palliative care online: The views of health care professionals. J Palliat Care 2008;24:41-8.  Back to cited text no. 58
    
59.St-Laurent-Gagnon T, Carnevale FA, Duval M. Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital. J Palliat Care 2008;24:26-30.  Back to cited text no. 59
    
60.Swinney R, Yin L, Lee A, Rubin D, Anderson C. The role of support staff in pediatric palliative care: Their perceptions, training, and available resources. J Palliat Care 2007;23:44-50.  Back to cited text no. 60
    
61.Mongeau S, Champagne M, Liben S. Participatory research in pediatric palliative care: Benefits and challenges. J Palliat Care 2007;23:5-13.  Back to cited text no. 61
    
62.Rallison L, Limacher LH, Clinton M. Future echoes in pediatric palliative care: Becoming sensitive to language. J Palliat Care 2006;22:99-104.  Back to cited text no. 62
    
63.Davies B, Larson J, Contro N, Cabrera AP. Perceptions of discrimination among Mexican American families of seriously ill children. J Palliat Med 2011;14:71-6.  Back to cited text no. 63
    
64.Yang CP, Leung J, Hunt EA, Serwint J, Norvell M, Keene EA, et al. Pediatric residents do not feel prepared for the most unsettling situations they face in the pediatric intensive care unit. J Palliat Med 2011;14:25-30.  Back to cited text no. 64
    
65.Baker JN, Kane JR, Rai S, Howard SC, Hinds PS; PCS Research Working Group. Changes in medical care at a pediatric oncology referral center after placement of a do-not-resuscitate order. J Palliat Med 2010;13:1349-52.  Back to cited text no. 65
    
66.Benini F, Trapanotto M, Spizzichino M, Lispi L, Pozza LV, Ferrante A. Hospitalization in children eligible for palliative care. J Palliat Med 2010;13:711-7.  Back to cited text no. 66
    
67.Getter AL. Difficult questions for pediatric palliative care providers. J Palliat Med 2010;13:239-40.  Back to cited text no. 67
    
68.Knapp CA, Madden VL, Curtis CM, Sloyer P, Shenkman EA. Family support in pediatric palliative care: How are families impacted by their children's illnesses? J Palliat Med 2010;13:421-6.  Back to cited text no. 68
    
69.Knapp CA, Madden VL, Wang H, Kassing K, Curtis CM, Sloyer PJ, et al. Effect of a pediatric palliative care program on nurses' referral preferences. J Palliat Med 2009;12:1131-6.  Back to cited text no. 69
    
70.Guertin MH, Côté--Brisson L, Major D, Brisson J. Factors associated with death in the emergency department among children dying of complex chronic conditions: Population-based study. J Palliat Med 2009;12:819-25.  Back to cited text no. 70
    
71.Dickens DS.Building competence in pediatric end-of-life care. J Palliat Med 2009;12:617-22.  Back to cited text no. 71
    
72.Kersun L, Gyi L, Morrison WE. Training in difficult conversations: A national survey of pediatric hematology-oncology and pediatric critical care physicians. J Palliat Med 2009;12:525-30.  Back to cited text no. 72
    
73.Michelson KN, Ryan AD, Jovanovic B, Frader J. Pediatric residents' and fellows' perspectives on palliative care education. J Palliat Med 2009;12:451-7.  Back to cited text no. 73
    
74.Schiff D, Kline C, Meltzer H, Auger J. Palliative ventriculoperitoneal shunt in a pediatric patient with recurrent metastatic medulloblastoma. J Palliat Med 2009;12:391-3.  Back to cited text no. 74
    
75.Zhukovsky DS, Herzog CE, Kaur G, Palmer JL, Bruera E.The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med 2009;12:343-9.  Back to cited text no. 75
    
76.Gerhardt CA, Grollman JA, Baughcum AE, Young-Saleme T, Stefanik R, Klopfenstein KJ. Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. J Palliat Med 2009;12:323-8.  Back to cited text no. 76
    
77.Baker JN, Rai S, Liu W, Srivastava K, Kane JR, Zawistowski CA, et al. Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center. J Palliat Med 2009;12:71-6.  Back to cited text no. 77
    
78.Knapp CA, Shenkman EA, Marcu MI, Madden VL, Terza JV. Pediatric palliative care: Describing hospice users and identifying factors that affect hospice expenditures. J Palliat Med 2009;12:223-9.  Back to cited text no. 78
    
79.Knapp CA, Madden V, Wang H, Curtis C, Sloyer P, Shenkman E. Spirituality of parents of children in palliative care. J Palliat Med. 2011;14:437-43.  Back to cited text no. 79
    
80.Feudtner C, Hexem KR, Shabbout M, Feinstein JA, Sochalski J, Silber JH. Prediction of pediatric death in the year after hospitalization: A population-level retrospective cohort study. J Palliat Med 2009;12:160-9.  Back to cited text no. 80
    
81.Menon BS, Mohamed M, Juraida E, Ibrahim H. Pediatric cancer deaths: Curative or palliative? J Palliat Med 2008;11:1301-3.  Back to cited text no. 81
    
82.Knapp CA, Madden VL, Curtis CM, Sloyer PJ, Huang IC, Thompson LA, et al. Partners in care: Together for kids: Florida's model of pediatric palliative care. J Palliat Med 2008;11:1212-20.  Back to cited text no. 82
    
83.Lee KJ, Dupree CY. Staff experiences with end-of-life care in the pediatric intensive care unit. J Palliat Med 2008;11:986-90.  Back to cited text no. 83
    
84.Cárdenas-Turanzas M, Tovalín-Ahumada H, Carrillo MT, Paéz-Aguirre S, Elting L. The place of death of children with cancer in the metropolitan areas of Mexico. J Palliat Med 2008;11:973-9.  Back to cited text no. 84
    
85.Lyon ME, Williams PL, Woods ER, Hutton N, Butler AM, Sibinga E, et al. Do-not-resuscitate orders and/or hospice care, psychological health, and quality of life among children/adolescents with acquired immune deficiency syndrome. J Palliat Med 2008;11:459-69.  Back to cited text no. 85
    
86.Himebauch A, Arnold RM, May C. Grief in children and developmental concepts of death #138. J Palliat Med 2008;11:242-3.  Back to cited text no. 86
    
87.Schiffman JD, Chamberlain LJ, Palmer L, Contro N, Sourkes B, Sectish TC. Introduction of a pediatric palliative care curriculum for pediatric residents. J Palliat Med 2008;11:164-70.  Back to cited text no. 87
    
88.Baker JN, Torkildson C, Baillargeon JG, Olney CA, Kane JR. National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 2007;10:420-9.  Back to cited text no. 88
    
89.Meier DE, Beresford L. Pediatric palliative care offers opportunities for collaboration. J Palliat Med 2007;10:284-9.  Back to cited text no. 89
    
90.Rushton CH, Reder E, Hall B, Comello K, Sellers DE, Hutton N. Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J Palliat Med 2006;9:922-33.  Back to cited text no. 90
    
91.Kane JR. Pediatric palliative care moving forward: Empathy, competence, quality, and the need for systematic change. J Palliat Med 2006;9:847-9.  Back to cited text no. 91
    
92.Jones BL. Tucked in my heart: The use of ethnopoetry to represent the meaning-making of social workers in pediatric palliative care. J Palliat Med 2006;9:789-90.  Back to cited text no. 92
    
93.Jones BL. Companionship, control, and compassion: A social work perspective on the needs of children with cancer and their families at the end of life. J Palliat Med 2006;9:774-88.  Back to cited text no. 93
    
94.Hays RM, Valentine J, Haynes G, Geyer JR, Villareale N, McKinstry B, et al. The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life. J Palliat Med 2006;9:716-28.  Back to cited text no. 94
    
95.Himelstein BP. Palliative care for infants, children, adolescents, and their families. J Palliat Med 2006;9:163-81.  Back to cited text no. 95
    
96.Liao S, Arnold RM. Editorial: Supporting pediatric palliative care: Helping ourselves. J Palliat Med 2006;9:161-2.  Back to cited text no. 96
    
97.Serwint JR, Rutherford LE, Hutton N. Personal and professional experiences of pediatric residents concerning death. J Palliat Med 2006;9:70-81.  Back to cited text no. 97
    
98.Mashayekhi SO, Hain RD, Buss DC, Routledge PA. Morphine in children with cancer: Impact of age, chemotherapy and other factors on protein binding. J Pain Palliat Care Pharmacother 2007;21:5-12.  Back to cited text no. 98
    
99.Contro N, Davies B, Larson J, Sourkes B. Away from home: Experiences of Mexican American families in pediatric palliative care. J Soc Work End Life Palliat Care 2010;6:185-204.  Back to cited text no. 99
    
100.Ko E, Berkman CS. Role of children in end-of-life treatment planning among Korean American older adults. J Soc Work End Life Palliat Care 2010;6:164-84.  Back to cited text no. 100
    
101.Jones BL, Sampson M, Greathouse J, Legett S, Higgerson RA, Christie L. Comfort and confidence levels of health care professionals providing pediatric palliative care in the intensive care unit. J Soc Work End Life Palliat Care 2007;3:39-58.  Back to cited text no. 101
    
102.McCoyd JL, Walter C. A different kind of holding environment: A case study of group work with pediatric staff. J Soc Work End Life Palliat Care 2007;3:5-22.  Back to cited text no. 102
    
103.Gutheil IA, Heyman JC. "They don't want to hear us": Hispanic elders and adult children speak about end-of-life planning. J Soc Work End Life Palliat Care 2006;2:55-70.  Back to cited text no. 103
    
104.Knapp CA, Madden VL, Curtis C, Sloyer PJ, Shenkman EA. Assessing non-response bias in pediatric palliative care research. Palliat Med 2010;24:340-7.  Back to cited text no. 104
    
105.Macdonald ME, Chilibeck G, Affleck W, Cadell S. Gender imbalance in pediatric palliative care research samples. Palliat Med 2010;24:435-44.  Back to cited text no. 105
    
106.Huang IC, Shenkman EA, Madden VL, Vadaparampil S, Quinn G, Knapp CA. Measuring quality of life in pediatric palliative care: Challenges and potential solutions. Palliat Med 2010;24:175-82.  Back to cited text no. 106
    
107.Monterosso L, Kristjanson LJ, Phillips MB. The supportive and palliative care needs of Australian families of children who die from cancer. Palliat Med 2009;23:526-36.  Back to cited text no. 107
    
108.Knapp C, Huang IC, Madden V, Vadaparampil S, Quinn G, Shenkman E. An evaluation of two decision-making scales for children with life-limiting illnesses. Palliat Med 2009;23:518-25.  Back to cited text no. 108
    
109.Wright B, Aldridge J, Wurr K, Sloper T, Tomlinson H, Miller M. Clinical dilemmas in children with life-limiting illnesses: Decision making and the law. Palliat Med 2009;23:238-47.  Back to cited text no. 109
    
110.Monterosso L, Kristjanson LJ. Supportive and palliative care needs of families of children who die from cancer: An Australian study. Palliat Med 2008;22:59-69.  Back to cited text no. 110
    
111.Monterosso L, Kristjanson LJ, Aoun S, Phillips MB. Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service. Palliat Med 2007;21:689-96.  Back to cited text no. 111
    
112.Lavy V. Presenting symptoms and signs in children referred for palliative care in Malawi. Palliat Med 2007;21:333-9.  Back to cited text no. 112
    
113.Miedema B, Hamilton R, Fortin P, Easley J, Matthews M. "You can only take so much, and it took everything out of me": Coping strategies used by parents of children with cancer. Palliat Support Care 2010;8:197-206.  Back to cited text no. 113
    
114.Yazdani S, Evan E, Roubinov D, Chung PJ, Zeltzer L. A longitudinal method of teaching pediatric palliative care to interns: Preliminary findings regarding changes in interns' comfort level. Palliat Support Care 2010;8:35-40.  Back to cited text no. 114
    
115.Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care 2007;5:355-65.  Back to cited text no. 115
    
116.Schachter SR. Bereavement summer camp for children and teens: A reflection of nine years. Palliat Support Care 2007;5:315-23.  Back to cited text no. 116
    


    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7]
 
 
    Tables

  [Table 1], [Table 2]

This article has been cited by
1 Paediatric palliative care: a review of needs, obstacles and the future
Jackie Williams-Reade,Angela L. Lamson,Sharon M. Knight,Mark B. White,Sharon M. Ballard,Priti P. P. Desai
Journal of Nursing Management. 2013; : n/a
[Pubmed] | [DOI]
2 Evidence-based palliative care: Role of palliative care journals
Kumar, S.P. and Sisodia, V.
Indian Journal of Palliative Care. 2013; 19(1): 76
[Pubmed]
3 Informing Social Work Practice Through Research With Parent Caregivers of a Child With a Life-Limiting Illness
Cadell, S. and Kennedy, K. and Hemsworth, D.
Journal of Social Work in End-of-Life and Palliative Care. 2012; 8(4): 356-381
[Pubmed]
4 Informing Social Work Practice Through Research With Parent Caregivers of a Child With a Life-Limiting Illness
Susan Cadell,Kimberly Kennedy,David Hemsworth
Journal of Social Work in End-Of-Life & Palliative Care. 2012; 8(4): 356
[Pubmed] | [DOI]



 

Top
Print this article  Email this article
Online since 1st October '05
Published by Wolters Kluwer - Medknow