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| ORIGINAL ARTICLE |
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| Year : 2013 | Volume
: 2
| Issue : 3 | Page : 176-184 |
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Reporting of "death and bereavement care": A systematic review and quantitative analysis of research publications in palliative care journals
Senthil P Kumar1, Vaishali Sisodia2
1 Adjunct Professor, Srinivas College of Physiotherapy and Research Centre, Mangalore, Karnataka, India
2 Post-Graduate Student, Srinivas College of Physiotherapy and Research Centre, Mangalore, Karnataka, India
| Date of Web Publication | 25-Oct-2013 |
Correspondence Address:
Senthil P Kumar
Adjunct professor, Srinivas College of Physiotherapy and Research Centre, Mangalore - 575 001, Karnataka
India
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/2278-344X.120586
Context: The most common concern among terminally ill patients in palliative care is death, which is often perceived as a psychosocial stigma. The knowledge, attitudes, beliefs, and experiences regarding death influence both the delivery of palliative care and its outcomes. Aims: This study was conducted with an aim to perform a quantitative analysis of research publications in palliative care journals for articles on death and bereavement care (DBC). Settings and Design: Systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles related to "death" in the title of the articles published in 2009 and 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: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows version 11.5. Results: The overall reporting rate among all journals was 5.27% (96/1821), and Palliat Support Care had the highest reporting rate of 14.4% (17/118), followed by BMC Palliat Care with 9.3% (4/43) and Palliat Med with 7.4% (16/216). Conclusions: The overall reporting rate for DBC articles in palliative care journals was very low, and very few randomized clinical trials and systematic reviews were found. The study findings indicate a lack of adequate evidence base for DBC. Keywords: Bereavement care, death and dying, evidence-based palliative care, journal reporting,publication trend, research analysis
How to cite this article:
Kumar SP, Sisodia V. Reporting of "death and bereavement care": A systematic review and quantitative analysis of research publications in palliative care journals
. Int J Health Allied Sci 2013;2:176-84 |
How to cite this URL:
Kumar SP, Sisodia V. Reporting of "death and bereavement care": A systematic review and quantitative analysis of research publications in palliative care journals
. Int J Health Allied Sci [serial online] 2013 [cited 2023 Mar 29];2:176-84. Available from: https://www.ijhas.in/text.asp?2013/2/3/176/120586 |
Introduction
The most common concern for terminally ill patients undergoing palliative care is death. [1] The goals of palliative care in the treatment of terminally ill patients are to improve their symptom control, [2] level of functioning, [3] and quality of life (QoL). [4] Death is often regarded as a complex psychosocial stigma which individuals at end-of-life often avoid discussions or interactions about. [5] Though death of an individual is an ultimate reality, [6] the reactions of the patient themselves (on impending death) or of the caregivers and health care professionals (before and after a patient's death) need not be similar in all situations, [7] and it should be understood that death is not a failure in palliative care, but a reality. [8] These differences may not only be attributed to the medical diagnoses, the symptom experience, and treatment side-effects, but also mostly to the socio-cultural [9] and demographic influences. [10] Thus, it is the responsibility of a palliative care team to make dying as a living process for both patients and staff. [11] The caring process extends from a continuum of supportive care to end-of-life care and then on to post-bereavement care, and is an essential component in a palliative health care model. [12],[13]
Death does involve moral, [14],[15],[16],[17] legal, [15],[16],[18] ethical, [19],[20] spiritual, [15],[21] and practical [22],[23] issues both for the family and the health care team, and thus, it is imperative that information and communication about death should be encouraged in routine clinical practice. [24] Issues related to impending death may be on "good death," [25] causation, [26] "place of death," [27],[28] and psychosocial issues (anxiety [29] and denial [30],[31] ). Right from referral until death, the palliative care outcomes measured should directly reflect the symptom pathways that patients experience. [32]
Despite the growing emphasis on death and bereavement care (DBC) in clinical palliative care practice and in palliative care education, [33],[34],[35] death is often stigmatized and management is frequently suboptimal. The attitudes toward death, both of patients [36] and health care professionals, [37],[38] determine the time course of a healthy [39] and joyful [40] death, which is the ultimate goal of palliative care. The current evidence era and the ensuing evidence-based practice warranted application of current research evidence into clinical decision making to facilitate evidence-based palliative care (EBPC). [41] Thus, an analysis of research evidence could not be based upon anecdotal findings, and so, there is a need to evaluate the reporting of research on DBC in palliative care journals. Previously published studies on analysis of palliative care journals reported on moral problems (ethical issues), [42] euthanasia, [43] chaplains and community-based clergy, [44],[45] religion and spirituality, [45],[46],[47] cancer pain, [48] pediatric palliative care, [49] QoL, [50] and cancer-related fatigue. [51] The objective of this paper was to perform a quantitative analysis of research articles on DBC, published in palliative care journals over the past 2 years.
Materials and Methods
Search strategy and criteria
Journals indexed in MEDLINE with the name "palliative" were included and searched for English papers with "death OR die OR dying OR dead OR bereaved OR bereavement" in the title of the papers published in 2009 and 2010.
Data synthesis
The total number of articles in all the selected journals was taken as N. The number of included DBC articles (N 1 ) based on search criteria was compared with total number of articles (N) to obtain reporting rates (RRs; N 1 /N%) for each journal. Such an estimate provided the RR for DBC. The journals were categorized broadly into multidisciplinary, medical, nursing, and other (social work) categories of palliative care journals. The included studies were grouped under four aspects, practice, education, research, and administration, and then categorized into original articles and review articles under each of the four aspects. The original articles were then again grouped into qualitative and quantitative studies. The review articles were grouped into narrative and systematic reviews. The qualitative and qquantitative studies 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].
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., Chicago, IL, USA). Comparison between journals and article categories was done visually.
Results
Overall journals' characteristics
The study included 12 palliative care journals with a total of 1821 articles and 96 included articles which met the inclusion criteria. The overall 2-year RR for articles on DBC is 5.27% [Figure 2]. The journals are: 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.
Individually, AJHPC had 16 articles, BMCPC had 4, COSPC had 1, IJPC had 2, IJPN had 12, JHPN had 0, JPPCP had 0, JPC had 6, JPM had 21, [33],[44] JSWELPC had 1, PSC had 17, and PM had 16 articles on DBC. Also refer [Table 1] for the respective RRs and [Figure 3] for comparison of number of DBC articles and "other" articles between the journals. PSC had the highest RR of 14.4% (17/118), followed by BMCPC with 9.3% (4/43) and PM with 7.4% (16/216).
Of the selected journals, seven were multidisciplinary (AJHPC, BMCPC, COSPC, IJPC, JPC, JPPCP, and PSC) with an RR of 5.15% (46/892), two were medical (JPM and PM) with an RR of 5.17% (37/715), two were nursing (IJPN and JHPN) with an RR of 6.15% (12/195), and one was other (social work- JSWEOLPC) with an RR of 5.26% (1/19) [Figure 4].
DBC studies on four aspects of practice, education, research, and administration
Of the 96 included articles, 79 articles were on practice, [52, [52],[53],[54],[55],[56],[57],[58],[59],[60],[61],[62],[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],[98],[99],[100],[101],[102],[103],[104],[105],[106],[107],[108],[109],[110],[111],[112],[113],[114],[115],[116],[117],[118],[119],[120],[121],[122],[123],[124],[125],[126],[127],[128],[129],[130],[131] 8 articles on education, [131],[132],[133],[134],[135],[136],[137],[138] no articles on research, and 9 articles were on administration. [139],[140],[141],[142],[143],[144],[145],[146],[147]
Of the 79 articles on DBC practice, there were 65 original articles [55],[56],[58],[60],[61],[62],[63],[64],[65],[67],[98], [70, [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],[98],[99],[100],[101],[102],[103],[104],[105], [107, ,[108],[109],[110],[111],[112],[113],[114],[115],[116],[117],[118],[120],[121],[125],[126],[127],[129],[130],[131] and 14 review articles. [52],[54],[57],[59],[66],[69],[101],[106],[109],[119],[122],[123],[124],[128] Of the 65 original articles, 51 studies used qualitative methods [55],[56],[58],[60],[61],[62],[63],[64],[65],[66],[67],[70],[71],[72],[73],[75],[76],[77],[79],[80],[81],[82],[83],[84],[85],[86],[87],[88],[91],[92],[94],[95],[100],[102],[105],[107],[108],[ 110],[111],[112],[113],[114],[115],[116],[117],[120],[121],[125],[127],[129],[131] and 14 studies used quantitative methods. [68],[74],[89],[90],[93],[96],[97],[98],[99],[103],[104],[118],[126],[130] Among the 51 qualitative studies, there were no randomized clinical trials, 2 non-randomized clinical trials, [65],[110] 8 cohort studies, [56],[58],[62],[67],[83],[94],[114],[116] 35 cross-sectional studies [55],[60],[63],[64],[70],[71],[72],[73],[75],[76],[77],[78],[79],[80],[81],[82],[84],[85],[86],[87],[95],[100],[102],[107],[108],[111],[112],[
115],[117],[121],[125],[127],[129],[131] , and 6 case reports. [61],[91],[92],[1 05],[113],[120] Among the 14 quantitative studies, there was 1 randomized clinical trial, [142] 7 cohort studies, [68],[74],[93],[98],[99],[103],[118] 1 case series, [97] 4 cross-sectional studies, [89],[90],[96],[130] and 1 case report.The analysis for practice-related articles is shown in [Table 2].
Of the eight articles on DBC education, there were seven original articles [53],[132],[133],[134],[136],[137],[138] and one review article. [135] All the seven original articles used qualitative methods, [53],[132],[133],[134],[136],[137],[138] and there was one non-randomized clinical trial, [138] one cohort study, [136] and five cross-sectional studies [53],[132],[133],[134],[137] in them.
There were no articles found that focused on the aspect of research on DBC.
Of the nine articles on DBC administration, all were original articles [139],[140],[141],[142],[143],[144],[145],[146],[147] which comprised six qualitative studies [139],[140],[142],[143],[146],[147] and three quantitative studies. [141],[144],[145] There were four cohort studies [139],[142],[146],[147] and two cross-sectional studies [140],[143] amongst the six qualitative studies. All the three quantitative studies were cohort studies. [141],[144],[145] The analysis of administration-related articles is shown in [Table 3].
Relative prevalence of articles on practice, education, research, and administration is shown in [Figure 5], and their comparison for original and review articles on DBC is provided in [Figure 6]. Comparison of original articles among the aspects for qualitative and quantitative study methods is shown in [Figure 7], and comparison between the three aspects (since there were no article on DBC research) of original articles for their study designs is given in [Figure 8],[Figure 9] and [Figure 10], respectively.
Discussion
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 DBC. This study included 12 palliative care journals. The previous authors, Hermsen and ten Have, reviewed 12 palliative care journals from 1984 to 1999 [42],[43] and found an RR of 12% for ethical issues (458 articles) and the euthanasia rate was unreported (75 articles). Hermsen and ten Have [45] reviewed 12 journals from 1984 to 2002 and found an RR of 2% for 80 articles on spirituality, pastoral care, and religion. Flanelly et al.[44] reviewed three palliative care journals from 1990 to 1999 and found an RR of 5.6% (47/838) for articles on the role of chaplains and clergy. Kumar found a 2-year RR of 5.6% for cancer pain articles [48] in 19 palliative care journals, 5-year RR of 2.66% for pediatric palliative care [49] articles in 12 palliative care journals, 5-year RR of 1.96% for articles on QoL [50] in 12 palliative care journals, and a 5-year RR of cancer-related fatigue [51] in 12 palliative care journals to be 1.04%. The reason why this study found a comparatively better RR in lesser number of years of publication (compared to the RRs of pediatric palliative care, QoL, and cancer-related fatigue) could only be due to the greater emphasis given toward DBC in the palliative care journals in recent years. This study included journals as they are indexed in MEDLINE, since it is the common database for evidence search and the last 2 years of analysis provided current information on RRs.
The study found some interesting observations - some expected, some rather unexpected. As expected, clinical focus on DBC was evident when a greater proportion of practice-related articles were found among the four aspects considered. Another expected finding was a lack of observed difference in reporting between professional categories of palliative care journals. The few unexpected observations include: Absence of articles focusing exclusively on research in DBC, lack of quantitative studies on DBC education, and very few randomized clinical trials (either qualitative or quantitative) and/or systematic reviews were found. The insufficient number of systematic reviews and randomized clinical trials virtually undermines the current EBPC since they are ranked the highest in hierarchy among the levels of evidence.
Health care professionals need to be aware of the relatively better reporting of DBC articles in palliative care journal literature and should shoulder the responsibility to foster better number of reporting high-quality research on DBC for EBPC. In future, similar reviews could be performed with quality appraisal and identify the quality of reporting DBC articles. Also, reviews from other related journals like Death Studies, Death Education, and/or general medical journals may yield different results. Comparison of reporting characteristics between journals based on their specialty would direct clinicians to find research appropriate to answer their relevant clinical questions during EBPC.
Conclusion
The overall 2-year prevalence in reporting of articles on DBC was low, which was only 5.27% among the 12 palliative care journals reviewed in this study. There were no articles found on DBC research, and very few randomized clinical trials and systematic reviews were found. These review findings indicate a lack of adequate evidence base for DBC, and therefore, further high-quality clinical trials are required to base effective clinical decisions on DBC for a better palliative care clinical practice.
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