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Parents' and families' experiences of care by health care professionals in the hospital setting following perinatal death: A systematic review

Fielding, Angela PhD, BA, BSocWk1,2; Haddow, Gaby PhD, BAppSci(Hons)1; Wilson, Sally MSc, BSc, RN, RM, MRCNA1,2,3; Fernandes, Christina BA(Hons), BSW1

JBI Database of Systematic Reviews and Implementation Reports: Volume 7 - Issue 8 - p 1–22
doi: 10.11124/jbisrir-2009-505
Reviewers
Free

Contact

A.Fielding@curtin.edu.au Phone: (08) 9266 7637

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Review question/objective

The overall objective is to determine from the best available evidence, the impact of care and/or support provided by health care professionals in the hospital setting on parents and families following perinatal death.

More specifically, the objectives are to identify:

  1. The effectiveness of care and/or support provided in the hospital setting to parents and families following a perinatal death
  2. The meaningfulness of care and/or support provided in the hospital setting to parents and families following perinatal death
  3. The appropriateness of care and/or support provided in the hospital setting to parents and families following perinatal death.
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Background

Over 7 million perinatal deaths occur worldwide each year of which approximately 1,400 stillbirths and 800 neonatal deaths occur within Australia.1 The death of a baby during the perinatal period is a profound experience for parents and families. The effects of perinatal death may be associated with adverse mental health with complicated or traumatic grief, depression, post traumatic stress disorder and anxiety occurring in both mothers and fathers.2 Symptoms of traumatic grief are associated with risk for other mental and physical health problems including suicide and myocardial infarction.3 Subsequent pregnancies can also be affected, with anxiety and prenatal attachment for both parents being reported.4 Differences in grief responses are also evident between mothers and fathers.5-7

For this review, the following meanings are attached to these key terms:

Perinatal death refers to the birth of a baby of 20 weeks gestation or more, which either dies before birth (stillbirth) or in the neonatal period, 28 days following birth.

When the gestation is not certain, a weight of 400 grams or more is used to classify as a stillbirth. Perinatal death and perinatal loss will be used interchangeably.

Bereavement is taken to mean an event such as a death, or loss of someone or something with great emotional attachment. Loss is a global term that encompasses many different causes and consequences. Although neutral, it is now invariably associated with death, although its origins are broader and include deprivation and/or absence.8

Grief refers to the emotional process, and mourning refers to the cultural process associated with reacting to or dealing with the loss.9(p21) Marris10(p4) argues that grief is a universal human response to loss; the “psychological process of adjustment to loss”. Fahlberg11(p141) describes grief as the “process through which one passes in order to recover from a loss”. Stroebe & Schut12(p7) write of the “emotional reaction to the loss of a loved one through death, which incorporates diverse psychological and physical systems and is sometimes associated with detrimental health consequences”. Harvey13 indicates that while there is some debate about the universality of grief and expressions of mourning grieving is seen as biological and mourning as cultural. Crying, fear and anger are almost universally common; most cultures provide social sanction for the expression of these emotions in the funeral rites and customs of mourning that follow bereavement.

Many initiatives have been implemented to assist parents and families to reduce adverse outcomes from the experience of perinatal loss. Standard practices in many hospitals aim to provide support to grieve and to make meaning of their loss.14, 15 These include the use of symbols, spirituality and rituals. In addition many families are offered the opportunity to have contact with their dead baby, provision of mementos to take home such as hand/footprints and photographs, and assistance with funeral arrangements.

Within the hospital setting, care and support is usually multidisciplinary, involving nurses, midwives, doctors, social workers, pastoral care workers, and bereavement counsellors. Referral to support groups is also often initiated in an acute care setting.16-18 Follow up care or support may be offered at home with contact as early as the day following discharge, which can be as soon as the day following the perinatal death19 to several weeks following the death.20 Further support offered to families to facilitate the grief process includes programs such as crisis intervention at varying times following the perinatal death,21 telephone follow-up,22 parental distress intervention program,23 family therapy,24 and various models of counselling.

Although most perinatal deaths involve hospital staff, where bereavement care and support work is initiated by professionals such as nurses, midwives, social workers, many times referral to a bereavement support group (which may be run by nonprofessionals) is recommended within hospital guidelines.

Referral to bereavement support groups and self help groups may occur prior to the perinatal death, with continuing support during and following the baby's death where various bereavement programs are implemented. Also, with rapidly developing technology and accessible communication via the internet, online chat rooms are another source of non-professional support which are used by families following a perinatal death. An ethnographic study of one such chat room found the ‘shared metamorphosis’ provided meaning to the mothers' loss and the online service meant that mothers would never be alone.25 As many of these support programs have been evaluated16, 18, 26, 27 it is timely to review them systematically to gather the evidence relating to support groups on which to base practice.

Many practices are based on Euro-American theories of loss and grief. Further studies have looked at the impact of perinatal death on families in other cultures and minority groups28-31 Lyons et al32(p64) explain that loss is a fundamental human experience that crosses borders, language, culture, age and social location. A demonstration of cultural sensitivity may facilitate the grief process and there may be a need for a framework for assessing culturally appropriate bereavement care following a perinatal death.29

Lyons et al32 provide an international view of several theoretical perspectives on grief and loss. Developmental or stage theories, which build on the work of Freud, Bowlby, Parkes, Kübler Ross and Worden, imply that people experience discrete stages of grief in response to loss. Based on a belief that a loss of attachment is necessary to give rise to grief, these theories focus on the ability to control one's responses. Grief work is seen as helping people to move through their grief.

Stress and coping theories of Selye33 and Stroebe and Schut12 suggest that people experiencing loss have to deal with two psychological processes simultaneously — acknowledging the loss and rebuilding their lives. Continuity theories propose that people who experience loss of a person wish to maintain feelings of continuity with their loved one.34 Trauma and post-trauma theories suggest that individuals interpret loss and trauma differently depending on contextual factors such as timing, socioeconomic conditions, perception of violence, preventability, lack of warning or time for preparation, and the opportunity to say goodbye.32 Theories of complicated grief35 explore grief that is complicated by additional factors such as multiple losses in a short period of time or grief in a person with severe mental illness.

Grief, within the context of perinatal death, is the primary outcome measured, most reliably by Lasker and Toedter36 using the Perinatal Grief Scale. The Perinatal Bereavement Scale6 and Perinatal Grief Intensity Scale have also been developed and utilised in a research environment. Other studies36, 37 have evaluated hospital care practices and interventions by measuring families' satisfaction with provision of support and care or by exploring families' experiences following the perinatal death. Anxiety and depression have been the psychological (psychometric) outcomes measured with varying instruments such as Beck's Depression Inventory38 and Edinburgh Depression Scale 39 As many different programs are espoused to benefit families following perinatal death, there is a need to systematically review the literature to base current practice on best available evidence.

Several systematic reviews of the research literature in regard to perinatal death have been undertaken to establish evidence based practice.40-44 However, these reviews have not provided sufficient direction on which to base practice. Flenady and Wilson42 updated the original systematic review undertaken by Chambers and Chan in 1998.41 However, their review was limited to randomised controlled trials and no studies met the rigorous criteria for inclusion. Gold and colleagues43 evaluated a broader category of research including all methodologies that contained direct parent data or opinions. They included 61 studies covering over 6,000 parents and although they reported some useful conclusions regarding care and support of bereaved parents, they limited their systematic review to studies where the care was provided within the United States of America.44 The majority of systematic reviews report maternal outcomes, few have reviewed the psychological effects of perinatal death on fathers.40

This systematic review aims to identify the evidence on which to base practice when caring for parents and families who have experienced a perinatal death.

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Criteria for considering studies for this review

Types of studies

The review will consider all quantitative and qualitative studies that meet the inclusion criteria. Studies of higher level evidence will be given priority over studies of lower level evidence. In the absence of a sufficient number of research studies, other text such as opinion papers and reports will be considered in a narrative summary.

Experimental and descriptive designs are likely to be identified. The quantitative component of the review will consider any randomised controlled trials; in the absence of RCTs other research designs, such as non-randomised controlled trials and before and after studies will be considered for inclusion in a narrative summary to enable the identification of current best evidence.

The qualitative component of the review will consider interpretive studies that draw on the experiences of parents'/families following a perinatal death including, but not limited to, designs such as phenomenology, grounded theory and ethnography. If higher level evidence is lacking then discussion papers and/or expert opinion will be considered.

Types of participants

The review will focus on studies where mothers and/or fathers and/or significant others have experienced a perinatal death for any reason. The support/care will have been initiated within the acute health care setting.

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Inclusion:

Perinatal death refers to the birth of a baby of 20 weeks gestation or more, which either dies before birth or in the neonatal period. Care or support will have been initiated within the hospital setting, including birth centres.

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Exclusion:

Pregnancy loss before 20 weeks or loss of baby after 28 days.

Types of ‘intervention’/phenomena of interest/components of care

Any study that investigates a link between any supportive measures provided by health care professionals, including but not limited to:

  • Emotional Support:
    • Counselling
    • Psychotherapy psychological support
  • Maternal/Physical care:
    • assistance with recovery;
    • inhibiting lactation;
    • follow up visits
  • Baby Care:
    • Memorabilia
      • photographs
      • foot/hand prints
  • Statutory Requirements:
    • Funeral arrangements
    • disposal of body
  • Spiritual Care:
    • Healing interventions
    • Rituals
  • Social Support:
    • Family
    • Significant others
  • Education
  • Communication

Types of outcome measures

  • Grief
  • Bereavement
  • Social adjustment/impact
  • Satisfaction with care
  • Depression
  • Anxiety
  • Post Traumatic Stress Disorder
  • Psychological impact
  • Stress
  • Qualitative - the experience
  • Helpful behaviours
  • Effects on subsequent pregnancies eg. anxiety
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Search strategy

The search strategy aims to find both published and unpublished studies reported in the period 1990 to 2008. 1990 was chosen as the starting date as interventions have been refined over the last two decades 45 following an increase in literature about the experience of perinatal death.

A three step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly the reference list of all identified reports and articles will be searched for additional studies.

The databases to be searched include:

  • AMED
  • AMI
  • APAIS-Health
  • CINAHL
  • Clinical evidence
  • Cochrane Library
  • EMBASE
  • Informaworld
  • Health & Society
  • MEDLINE (1966-)
  • PILOTS: Published International Literature on Traumatic Stress
  • ProQuest
  • PsycINFO
  • Science Direct
  • Sociological Abstracts
  • Web of Knowledge
  • Google Scholar

The initial search strategy will use a combination of the following keywords (MESH terms will be identified in the initial search):

perinatal death

perinatal loss

perinatal palliative care

perinatal hospice

stillbirth

fetal death in utero

fetal palliative care

neonatal death

miscarriage

infant death

parents/families/siblings

bereavement

grief and loss

Post Traumatic Stress Disorder

acute care

hospital care

support

satisfaction with care

Hand searching of relevant journals and conference proceedings will be undertaken to reveal additional grey literature and unpublished studies.

The search for unpublished studies will include:

  • Dissertation and theses indexes
  • Conference proceedings
  • Research and clinical trials registers
  • Web sites of relevant associations
  • Direct communication with researchers and related professional group networks and consumer groups

Experts in the field will be contacted to ensure that all relevant studies are located and included.

Abstracts of articles in Spanish, Chinese, Japanese, German, French and Arabic will be assessed for relevance against the inclusion and exclusion criteria before being translated (translation resources only being available in these languages).

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Assessment of methodological quality

Quantitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI, Appendix I).

Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute

Qualitative Assessment and Review Instrument (JBI-QARI, Appendix II). Textual papers, if included in the review, will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI, Appendix III).

Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

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Data extraction

Quantitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-MAStARI (Appendix IV).

Qualitative data will be extracted from papers included in the review using the standardised data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument JBI-QARI (Appendix V).

Textual data will be extracted from papers included in the review using the standardised data extraction tool from JBI-NOTARI (Appendix VI.

The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

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Data synthesis

Quantitative papers will, where possible be pooled in statistical meta-analysis using the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). All results will be subject to double data entry. Odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed using the standard Chi-square test. Where statistical pooling is not possible the findings will be presented in narrative form.

Qualitative research findings will, where possible be pooled using the Qualitative Assessment and Review Instrument (JBI-QARI). This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rates according to their quality, and categorising these findings on the basis of similarity in meaning (Level 2 findings). These categories are then subjected to a metasynthesis in order to produce a single comprehensive set of synthesised findings (Level 3 findings) that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.

In the event that insufficient research papers are located, textual papers will, where possible be pooled using the Narrative, Opinion and Text Assessment and Review Instrument (JIB-NOTARI). This will involve the aggregation or synthesis of conclusions to generate a set of statements that represent that aggregation, through assembling the conclusions to generate a set of statements that represent that aggregation, through assembling and categorising these conclusions on the basis of similarity in meaning. These categories are then subjected to a metasynthesis in order to produce a single comprehensive set of synthesised findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the conclusions will be presented in narrative form.

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Conflicts of interest

No conflicts of interest have been identified by the review team or the expert review panel.

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Acknowledgments

This protocol was reviewed by the following expert panel members:

Dr Katrina Stratton, Lecturer, Social Work and Social Policy, University of Western Australia.

Ms Belinda Jennings, Clinical Midwife Consultant, Labour and Birth Suite, King

Edward Memorial Hospital, Perth, Western Australia

Ms Stephanie Dowden, Clinical Nurse Consultant, Palliative Care, Princess Margaret

Hospital for Children, Perth, Western Australia

Ms Celine Harrison, Chief Social Worker, King Edward Memorial Hospital, Perth

Western Australia.

Dr Sylvia Wilcock, Snr Lecturer, School of Nursing and Midwifery, Robert Gordon

University, Aberdeen, Scotland

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References

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3. Prigerson HG, Shear MK, Jacobs SC, Reynolds CF, Maciejewski PK, Davidson JR. Consensus criteria for traumatic grief: A preliminary empirical test. Br. J. Psychiatry. 1999; 174:67-73.
4. Armstrong DS. Impact of prior perinatal loss on subsequent pregnancies. J. Obstet. Gynecol. Neonatal Nurs. 2004; 33(6):765-773.
5. Samuelsson M, Radestad I, Segesten K. A waste of life: Fathers' experience of losing a child before birth. Birth. 2001; 28(2): 124-130.
6. Stinson KM, Lasker JN, Lohmann J, Toedter LJ. Parents grief following pregnancy loss: A Comparison of mothers and fathers. Family Relations. 1992; 41(2):218-223.
7. Wing DG, Clance PR, Burge-Callaway K, Armistead L. Understanding gender differences in bereavement following the death of an infant: Implications for treatment. Psychotherapy. 2001; 38(1):60-73.
8. Currer C. Loss and Social Work. Exeter, UK: Learning Matters; 2007.
9. Oliviere D, Hargreaves R, Monroe B, editors. Good Practices in Palliative Care. Aldershot: Ashgate; 1998.
10. Marris P. Loss and Change. London: Routledge; 1993.
11. Fahlberg V. A Child's Journey Through Placement. Indianapolis: Perspectives Press; 1991.
12. Sroebe M, Schut H. The dual process model of coping with bereavement: Rationale and description. Death Stud. 1999; 23(3):197-224.
13. Harvey J, editor. Perspective on Loss: A Sourcebook. Washington, DC: Taylor & Francis; 1998.
14. Bennett SM, Litz BT, Lee BS, Maguen S. The scope and impact of perinatal loss: Current status and future directions. Professional Psychology-Research and Practice. 2005; 36(2): 180-187.
15. Capitulo KL. Evidence for healing interventions with perinatal bereavement. Matern. Child Nurs. J. 2005; 30(6):389-96.
16. Cote-Arsenault D, Freije MM. Support groups helping women through pregnancies after loss. West. J. Nurs. Res. 2004; 26(6):650-70.
17. Hutti MH. Social and professional support needs of families after perinatal loss. J. Obstet. Gynecol. Neonatal Nurs. 2005; 34(5):630-638.
18. Miyamoto N, Ota N, Horiuchi S. Care for mothers of stillborn babies: Selfhelp meetings to encourage their psychological growth. Journal of St Lukes Society for Nursing Research. 2005; 9(1):45-54.
19. Princess Margaret Hospital for Children. Nursing care standards:1.10 Long term care of the family following a child's death In: Pediatric Nursing Practice Manual; 2007.
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21. LaRoche C, Lalinec-Michaud M, Engelsmann F, Fuller N, Copp M, McQuade-Soldatos L, et al. Grief reactions to perinatal death—a follow-up study. Can. J. Psychiatry. 1984; 29(1):14-9.
22. Mittelstaedt E, Bice-Stephens WM, Russell M. Perinatal grief support: Developing a telephone follow-up pathway. Mother Baby Journal. 2000; 5(4):32-6.
23. Murray JA, Terry DJ, Vance JC, Battistutta D, Connolly Y. Effects of a program of intervention on parental distress following infant death. Death Stud. 2000; 24(4):275-305.
24. Oikonen J, Brownlee K. Family therapy following perinatal bereavement. Family Therapy. 2002; 29(3):125-140.
25. Capitulo KL. Perinatal grief online. Matern. Child Nurs. J. 2004; 29(5):305-11.
26. Reilly-Smorawski B, Armstrong AV. Bereavement support for couples following death of a baby: Program development and 14-year exit analysis. Death Stud. 2002; 26(1):21-37.
27. Schott J, Henley A. Pregnancy loss and death of a baby: the new Sands Guidelines 2007. British Journal of Midwifery. 2007; 15(4):195-8.
28. Chichester M. Multicultural issues in perinatal loss. AWHONN Lifelines. 2005; 9(4):312-20.
29. Hebert MP. Perinatal bereavement in its cultural context. Death Stud. 1998; 22(1):61-78.
30. Kavanaugh K, Hershberger P. Perinatal loss in low-income African American parents. J. Obstet. Gynecol. Neonatal Nurs. 2005; 34(5):595-605.
31. Van P, Meleis AI. Coping with grief after involuntary pregnancy loss: Perspectives of African American women. J. Obstet. Gynecol. Neonatal Nurs. 2003; 32(1):28-39.
32. Lyons K, Manion K, Carlsen M. International Perspectives on Social Work: Global Conditions and Local Practice. Basingstoke: Palgrave Macmillan; 2006.
33. Selye H. The Stress of Life. New York: McGraw-Hill; 1956.
34. Klass D, Silverman P, Nickman S, editors. Continuing Bonds: New Understandings of Grief. Philadelphia: Taylor & Francis; 1996.
35. Rando T. Grief, Dying and Death: Clinical Interventions for Caregivers. Illinois: Research Press; 1984.
36. Lasker JN, Toedter LJ. Satisfaction with hospital-care and interventions after pregnancy loss. Death Stud. 1994; 18(1):41-64.
37. Murray J, Callan VJ. Predicting adjustment to perinatal death. Br. J. Med. Psychol. 1988; 61(Pt 3):237-44.
38. Carrera L, Diez-Domingo J, Montanana V, Monleon Sancho J, Minguez J, Monleon J. Depression in women suffering perinatal loss. Int. J. Gynaecol. Obstet. 1998; 62(2):149-53.
39. Hughes PM, Turton P, Evans CDH. Stillbirth as risk factor for depression and anxiety in the subsequent pregnancy: cohort study. Br. Med. J. 1999; 318(7200):1721-1724.
40. Badenhorst W, Riches S, Turton P, Hughes P. The psychological effects of stillbirth and neonatal death on fathers: Systematic review. J. Psychosom. Obstet. Gynaecol. 2006; 27(4):245-256.
41. Chambers HM, Chan FY. Support for women/families after perinatal death. Cochrane Database Syst. Rev. 1998; 2.
42. Flenady V, Wilson T. Support for mothers, fathers and families after perinatal death. Cochrane Database Syst. Rev. 2008; (1).
43. Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J. Perinatol. 2007; 27(4):230-237.
44. Gold KJ, Dalton VK, Schwenk TL. Hospital care for parents after perinatal death. Obstet. Gynecol. 2007; 109(5):1156-1166.
45. Callister LC. Perinatal loss - A family perspective. J. Perinat. Neonatal Nurs. 2006; 20(3):227-234.
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Appendices

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Appendix I

JBI Critical Appraisal Checklist for Experimental Studies

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JBI Critical Appraisal Checklist for Comparable Cohort/ Case Control

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Appendix II

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JBI QARI Critical Appraisal Checklist for Interpretive & Critical Research

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Appendix III

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JBI Critical Appraisal Checklist for Narrative, Expert opinion & text

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Appendix IV

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JBI Data Extraction Form for Experimental/Observational Studies

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Appendix V

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QARI Data Extraction Form for Interpretive & Critical Research

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Appendix VI

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JBI Data Extraction for Narrative, Expert opinion & text

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© 2009 by Lippincott Williams & Wilkins, Inc.