Original Article

Palliative Medicine 24(4) 435–444 ! The Author(s) 2010 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216309354396 pmj.sagepub.com

Gender imbalance in pediatric palliative care research samples

Mary Ellen Macdonald Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada; Palliative Care Program, Montreal Children s Hospital of the McGill University Health Centre, Montreal, Quebec, Canada. Gillian Chilibeck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada William Affleck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada Susan Cadell Manulife Centre for Healthy Living, Lyle S Hallman Faculty of Social Work, Wilfrid Laurier University, Waterloo, Ontario, Canada

Abstract We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0–18 years who were expected to die or had died; (5) had ‘parent’ in the title; and (6) focused on parents’ experiences or on parents’ perspectives regarding the child’s illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes ‘parental’ in this literature continues to be primarily ‘maternal’. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on ‘parental perspectives’. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed. Keywords Pediatric palliative care, parental perspectives, gender, sampling, research methods

Background
Pediatric palliative care is a growing field of health care specialization and research.1,2 A key aspect of improving palliative care services for children is understanding the values and needs of the child’s parents.3 In an attempt to effectively integrate parents in pediatric end-of-life care and treatment, psychosocial research is increasingly focusing on parental experiences and perspectives, including on bereavement. As a result, ‘parental perspectives’ research has become a popular category in many areas of pediatric palliative care. Both qualitative and quantitative research has been conducted, covering areas of concern such as communication,4–7 decision-making,8–11 bereavement,12–19

perceptions of quality of end-of-life care,20–23 and even parents’ experiences of research participation.24–26 Parental perspectives research is, however, prone to certain logistical and ethical challenges. One key methodological difficulty is in the area of sampling. In psychosocial research in general, research samples tend to include more women than men.27–29 While the majority of children have both a mother and a father involved in some capacity in their care, even the most cursory examination of pediatric palliative care literature suggests that fathers are much less present in research samples than mothers. Gender differences are relevant to many areas of parenting,30 including parenting a child with a chronic illness,31–33 or critical illness.28,34–36

Corresponding author: Mary Ellen Macdonald, Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada. Email: mary.macdonald@mcgill.ca

to suicide. we performed a systematic review of research studies on parental perspectives in pediatric palliative care research using three databases (MEDLINE. and PsycINFO). ‘child’s death’ (n ¼ 39). To begin. be published in English.g. sudden infant death syndrome). (d) had truncated ‘parent’ in the title of the article (e. focusing on the ratio of mothers to fathers participating in the studies. and thereby potentially help to correct. e. (d) focused on parents’ experiences with a dying child (excluding articles specifically about children who died suddenly/unexpectedly. parents. murder. As a first step. The goal of this study was to quantify the asymmetric representation of mothers and fathers in pediatric palliative care research on parental perspectives. Methods This project was part of a larger national study on the socio-cultural aspects of parental bereavement in Canada funded by the Social Science and Humanities Research Council of Canada. We therefore sought to examine. 45 articles were retrieved (see the Appendix). pediatric’ (explode) or ‘bereavement’ (explode to include ‘grief’) or ‘attitudes to death’ or ‘anticipatory grieving’ Limitations Palliative Medicine 24(4) Results 865 English language Years: 1988–2008 Research Articles PsycINFO (a) (Ovid) English language Years: 1988–2008 Peer Reviewed 615 PsycINFO (b) (Ovid) None 249 CINAHL (EBSCO) English language Years: 1988–2008 Journal Articles Peer Reviewed Research Articles 720 – 346 duplicates Imbalanced research samples preclude a careful analysis of these differences.g. explode) or ‘family’ (explode) or ‘parent-child relations’ AND 2) ‘Palliative care’ (explode) or ‘terminally ill patients’ (explode) or ‘grief’ (explode) or ‘hospice’ or ‘pediatric palliative care’ (keyword) Key concept terms: ‘bereaved parent’ (n ¼ 109). selecting only those fitting all of the following inclusion criteria: (a) conducted in North America. not on outcomes regarding parental health). the objective of this study was to assess the sampling performance of research on parental perspectives in pediatric palliative care and to examine if and how this bias was treated in study analysis and findings. and describe research conducted between 1988–2008. parenting etc). parental. Results Increase in parental perspectives research An unanticipated result of this systematic review was that it demonstrated an increase in research on parental perspectives in pediatric palliative care over the .436 Table 1. CINAHL. explode. Research methods and samples of all 45 articles were analyzed. ‘child death’ (n ¼ 79). keyword) or ‘parent-child relations’ or ‘family’ AND 2) ‘Palliative care’ or ‘terminal care’ or ‘hospice care’ or ‘bereavement’ (explode to include ‘grief’) or ‘hospitals. parent. Research parameters demanded that articles include empirical research. (c) focused on parents of children who were expected to die or had died.g. Keyword ‘Search Terms’ are outlined in Table 1. (b) focused on parents of children aged 0–18 years (excluding perinatal loss). and ‘parental grief’ (n ¼ 22) 1) ‘Parents’ (explode) or ‘parental attitudes’ (explode) or ‘parent-child relations’ (explode) AND 2) ‘Terminal care’ or ‘hospice care’ or ‘palliative care’ or ‘intensive care units. and approved by the McGill University Institutional Review Board. See Table 2 for results. pediatrics’ or ‘pediatric palliative care’ (keyword) 1) ‘Parents’ (focus. Keyword search terms Database (Host) Medline (Ovid) Search Terms 1) ‘Parent’ (focus. and (e) focused on parents’ perspectives regarding the child’s illness/death (e. In total. this gender imbalance. with attention to these ratios in study findings. Two graduate students (GC and WA) independently examined the resultant 2103 articles.

% mothers. parents.ME Macdonald et al.5% 64% 75% 67% 64% 79% n/a 67% 61% 64% 68% 94% 100% 79% 70% (continued) . Total mothers. fathers. Table 2. by article.5% 79% 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 22 44 9 41 5 24 2 28 35 7 16 18 21 36 39 15 23 25 38 40 45 4 8 11 14 17 20 9 14 15 39 n/a 20 110 4 19 10 4 24 12 5 4 4 20 15 n/a 2 11 10 9 1 0 41 17 69 89 75 137 n/a 36 152 66 59 23 8 120 20 9 12 8 36 55 n/a 4 17 18 19 17 12 153 39 78 103 90 176 n/a 56 262 70 78 33 12 144 32 14 16 12 56 70 n/a 6 28 28 28 18 12 194 56 88% 86% 83% 78% n/a 64% 58% 94% 75% 70% 67% 83% 62. by year Article # (see corresponding bibliography in Appendix) 437 YEAR 1988 1989 1990 1991 1992 1993 1994 # Fathers # Mothers Total Parents % Mothers 26 13 29 42 1 6 27 34 10 12 37 3 n/a 15 45 0 39 10 n/a n/a 3 9 18 n/a 21 158 10 39 19 n/a n/a 5 34 21 n/a 36 203 10 78 29 n/a n/a 8 43 86% n/a 58% 78% 100% 50% 66% n/a n/a 62.

40% of the 1988–1992 1993–1997 1998–2002 2003–2008 Year of publication Figure 1. what constitutes ‘parental’ in this literature continues to be primarily ‘maternal’. In our sample. Continued Article # (see corresponding bibliography in Appendix) 31 32 3 19 30 33 43 Palliative Medicine 24(4) YEAR # Fathers 0 2 2 17 4 12 3 # Mothers 35 9 5 39 48 62 36 Total Parents 35 11 7 56 52 74 39 % Mothers 100% 82% 71% 70% 92% 84% 92% 2008 last 5 years (Figure 1).438 Table 2. . Percentage of mothers and fathers in published studies. 100 90 80 Percentage mothers : fathers 70 60 50 40 30 20 10 0 1991 1993 2006 Overall average 1992 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2007 2008 Publication year Fathers Mothers Figure 2. ‘Parent’ as synonymous with mother # Articles 30 25 20 15 10 5 0 3 8 6 28 Research samples: While there is increasing research on ‘parental perspectives’. 1791 (75%) of whom were mothers. and 583 (25%) of whom were fathers (Figure 2). the percentage of mothers ranged from 50–100% of research samples. by publication year. 62% (n ¼ 28) were published between 2003 and 2008. whereas the percentage of fathers ranged from 0–50%. Number of published studies by publication year. the 45 articles in our sample relied on the participation of 2374 parents. In our sample of 45 articles from 1988–2008. Across the years 1988–2008.

While this article is the first to quantify this bias. In 34 of the articles. interestingly. Of the articles that did include couples and that did provide full details (n ¼ 19). Polit and Beck discovered an identical imbalanced ratio of women to men in their review of general nursing research.42.48 Our review suggests research on ‘parental perspectives’ in pediatric palliative care has become increasingly popular. In seven studies. Discussion Mothering and fathering can involve different and varied roles. researchers in palliative care have been aware of this bias for many years. Table 3 provides a breakdown of gender ratios by study methods.30 For example. Of 45 articles. 34 couples participated as couples. there was no explicit reference to the sampling imbalance in the study findings. and no gender analysis was performed. Interestingly. and six used mixed methods. regardless of how they participated in the studies (e. researchers are failing to include a careful analysis of this gender imbalance in research results. For example. and permitted to grieve and care for the dying in gendered ways. Of the remaining 40 articles. address this as a limitation. but complete details were not provided on how exactly the couple contributed to the sampling (e. with 84% of the sample being mothers and 16% fathers (See Table 3). societal expectations and physical requirements. 23 used qualitative methods. together or separate) are removed from the data set. this was based on a study of couples. In addition. seek treatment or effectively utilize available health and social policies. there was no mention of the sampling imbalance. journal editors and reviewers have not required researchers to acknowledge the gender imbalance in their sample and. 439 response to one question between mothers and fathers). Of our 45 articles. while the gender imbalance was not addressed. it was often not clear exactly how the couples participated in the research (e.28. While this increase is important for the advancement of the field.ME Macdonald et al. health-seeking behaviors and abilities of bereaved mothers and fathers to access support. Chesler and Parry28 Research analysis: In the majority of articles.g. and 42% of the articles had samples with less than 25% fathers. encouraged. Three of the articles were based on samples with 100% mothers and five articles did not provide a gender ratio breakdown. articles were based on samples with more than 75% mothers. at a minimum.g. the overall ratio of mothers to fathers is even more dramatic. responsibilities. whether the couples participated individually in interviews or together).g. 12 explicitly mentioned couples in the data. While many of the other articles included couples. a difference in Table 3.37–47 Literature shows how gendered expectations and experiences of both parenthood and bereavement simultaneously shape the needs. number of couples in the sample. five did not describe the gender of participants. In only four studies was the gender imbalance addressed as one of the limitations to the study. if all known couples. whereas 416 individuals from 208 couples participated as individuals. 11 used quantitative methods.27 Further. especially in the last 5 years. our results are not surprising. some gender differences were discussed in the analysis (e. men and women are expected. or separately as individuals). and despite the fact that gender shapes experiences of parenting. our review also suggests that researchers are uncritically using the term ‘parent’ to describe participant samples that rarely have equal representation of fathers and mothers. While 75% of research samples of ‘parents’ are actually mothers. Gender ratios by study method Qualitative n ¼ 23 studies Including Couples: Mothers Fathers Excluding Couples: Mothers Fathers Quantitative n ¼ 11 studies Mixed Methods n¼6 studies All Articles n ¼ 40 studies 73% (578) 28% (211) 78% (898) 22% (311) 82% (315) 18% (61) 75% (1791) 25% (583) 82% (199) 18% (44) 82% (747) 18% (160) 94% (221) 6% (15) 84% (1167) 16% (219) .g. One article did have equal representation of mothers and fathers. together as a couple.

54 Our findings suggest that proactively including couples in research sampling may be one way to increase the participation of fathers. end-of-life care. when recruiting fathers.53. While expanding the data to include articles from outside of North America and in other languages would increase our data. The findings of this study suggest areas for future research. our knowledge of the field of pediatric palliative care suggests that it would not substantially change our research findings. which in combination may inadvertently result in the creation of gender-biased interventions. Limitations The parameters we used in conducting our search of the published literature constitute the principal limitation of this study.50 It has also been suggested in the literature that data collection via interview methods may be more conducive to women’s styles of communication. there are serious implications of this bias for clinical practice: by over-representing mothers and under-representing fathers. Such methods include photovoice. balanced gender sampling and accurate analysis . for which participants are asked to represent their Palliative Medicine 24(4) experiences through photographic images and then invited to speak about the photos. While perhaps not unexpected. caregiving and bereavement experiences. We believe that looking closely at data collection methods – both qualitative and quantitative. according to our findings – is an important place to start. mothers are often more likely than fathers to play the role of spokesperson or gatekeeper for the family. we imposed these limitations in order to create a manageable data set. While this research would be interesting to analyze. Gender socialization theory suggests that men are socialized into a more non-verbally expressive manner than women. there are research methods that do not rely solely on verbal articulation and face-to-face interaction that may be more conducive to authentically representing male expression. For example. A more substantial limitation. Further. as researchers most often are – may be uncomfortable for many fathers. Given how profoundly gender can shape experiences of both parenthood and grief.56 Literary forms such as poetry57 or artistic forms such as wood carving can enable some participants to convey emotional experiences that they may have difficulty fitting in the confines of ordinary language.52 Research that requires the participant to come to the hospital to complete a questionnaire or interview may be more successful with mothers.51. this research runs the risk of reinforcing the social assumption that mothers are necessarily the primary caregivers of children. recruitment that proceeds with a phone call to the family home may be more likely to reach mothers. while simultaneously marginalizing men’s parenting.440 wrote that fathers’ voices were under-represented in the literature. death and bereavement has been more successful than fathers because the recruitment strategies and data collection methods are more mother-friendly. however. Our focus was on English articles from North America with the word ‘parent’ in the title. researchers might consider emphasizing the health and social benefits the study hopes to have for other parents. It is possible that recruiting mothers for research addressing childhood illness. recruiting and sampling must be adapted to the needs of the research participants. not all parents will identify with or conform to gender patterns. as well as encouraging fathers who might be dissuaded by the anticipation of having to talk about their emotional experiences. this is a way to emphasize the concrete utility of fathers’ contributions. To contend with this socialization. research claiming to provide ‘parental perspectives’ does not equally reflect the experiences and needs of mothers and fathers.49. is that all articles that specifically focused on mothers or fathers would have been excluded from our sampling if they used ‘mother’ or ‘father’ or ‘couple’ in the title. The idea of sharing personal feelings and experiences with others – particularly strangers. participants are encouraged to reflect and write about their experiences in a solitary environment and then share the writing with a researcher. For example. Research also suggests that men tend towards a more instrumental style of grieving. Conclusion Amidst the growing interest in research on parental perspectives in pediatric palliative care. who are more likely to accompany the child to the clinic because their work situations are often more flexible than those of fathers.55 When using narratives. which also vary cross-culturally. attempts to accommodate gender differences in research always run the risk of further reinforcing gender assumptions and stereotypes. Finally. it does not change the finding that many researchers are using the term ‘parent’ to gloss imbalanced samples. and not ‘parent’. As in any research project.38 Therefore. Researchers must be attentive to the nuances and complexities of gender identities and roles. the expression of emotions is often seen as inappropriate for men. as such. The deficit in the numbers of fathers in studies suggests that we need to be circumspect in drawing conclusions and building interventions based on study findings to date. there are a number of strategies that researchers can employ to increase the recruitment of fathers. with a focus on concrete problem solving. A starting point would be addressing why this imbalance exists in palliative care research.

Carnevale FA. 24: 122–134. 12. Hendricks-Ferguson VL. Omega J Death Dying 1992. Liben S. Burns JP. End-of-life decision making by adolescents. 5: 355–365. and data gathering methods. Meyer EC. 23: 9155–9161. Parents’ perspectives regarding a physician-parent conference after their child’s death in the pediatric intensive care unit. . Connaughty S. Briller SH. 3. is essential for research on ‘parental perspectives’. Death Stud 1994. Parent and child perspectives on physician communication in pediatric palliative care. et al Parent and physician perspectives on quality of care at the end of life in children with cancer. Omega J Death Dying 1994. et al. Sarnaik AP. Zeltzer LK. Pediatric end-of-life care: lessons learned from parents. 19. 26: 43–51. 23. 441 11. Parental perspectives on end-of-life care in the Appendix The following articles were used in the study. Parents’ and children’s perspectives of a children’s hospice bereavement program. Thurston CS. 29: 303–312. JOGNN 1997. recruitment strategies. 116: 884–890. Thurston CS. J Nurs Admin 2002. Meert KL. Collins J. Meert KL. Jovcevska V. 18. The inner representation of the dead child and the worldviews of bereaved parents. Hsiao J. Oakes L. Eggly S. 151: 50. 17. Consider this. Continuity of care and caring: what matters to parents of children with life-threatening conditions. 8. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Pediatr Crit Care Med 2003. et al. Davies B. Cook K. 7: 6–15. Truog RD. Oncol Nurs Forum 1997. Meert KL. Parental perspectives of initial end-of-life care communication. 24. 26: 255–272. Macdonald ME. 20: 335–346. Pediatr Intens Care Nurs 2006. Solomon MZ. Berg DH. Barrera M. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. 22. 6. Pediatrics 2006. it is essential that future research address the complex reasons for the gender imbalance in research samples.ME Macdonald et al. Palliat Suppor Care 2007. Mack JW. Understanding of prognosis among parents of children with cancer: parental optimism and the parent–physician interaction. 18: 105–129. D’Agostino NM. Furman W. 117: 649–657. Hilden JM. Burns JP. Ritholz MD. Pollack M. J Clin Oncol 2005. 14. et al. Omega J Death Dying 2007. Kavanaugh K. Anger and the desire for retribution among bereaved parents. 32: 5–6. 7. Drenovsky CK. Parents’ experience surrounding the death of a newborn whose birth is at the margin of viability. . What parents of seriously ill children value: Parent-to-parent connection and mentorship. 6: 420–427. 9. Meyer EC. Cancer Nurs 2001. 23: 14–23. 25: 1357–1362. Braun MJ. J Palliat Care 2007. and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Truog RD. Meaning reconstruction in the experience of parental bereavement. Meert KL. Watterson J. Mack JW. Chris Feudtner for his editorial assistance on earlier drafts of this paper. The spiritual needs of parents at the time of their child’s death in the pediatric intensive care unit and during bereavement: a qualitative study. Furman W. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Palliat Support Care 2008. Int J Palliat Nurs 2007. Further. 10. End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatrics 2005. 13. 6: 33–41. Distler V. 20. Heller KS. Truth and consequences: parental perspectives on autopsy after the death of a child. Pediatr Crit Care Med 2008. 4: 214. Wolfe J. Griffith JL. 24: 1523–1528. 1. Pediatr Crit Care Med 2005. 2. Brenner A. Pollack M. Cook EF. et al. Macdonald ME. Berlin-Romalis D. 4. Bereaved parents’ perspectives on their needs. 55: 117–130. Team for the Initiative for Pediatric Palliative Care Investigator. J Pediatr Nurs 2005. Parents’ perspectives on physician–parent communication near the time of a child’s death in the pediatric intensive care unit. Acknowledgements The authors would like to acknowledge Dr. 4: 214–219. . Eggly S. Konrad SC. Meyer EC. Evan EE. Hinds PS. Oakes L. 13: 522–531. J Clin Oncol 2007. Curley MA. 5. It is thus essential that we pay attention to which parents are participating in our research and are thereby informing our understandings of ‘parental’ values and needs and any resultant interventions. 15. 16. including the gendered assumptions inherent in research designs. Klass D. 9: 2–7. Cohen SR. Pediatr Crit Care Med 2000. Parental experience of highly technical therapy: survivors and nonsurvivors of extracorporeal membrane oxygenation support. parents. Steele R. J Pediatr 2007. Davies B. Hinds PS. et al. et al. Liben S. 21.

34. Int J Palliat Nurs 2006. 31: 277–299. 22: 272–282. 10: 198–206. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Rini A. Paediatric palliative care: challenges and emerging ideas. 28: 261–271. 3. 13: 522–531. 40. Parental bereavement: The crisis of meaning. 6. JAMA 2000. Pediatric palliative care: guiding principles and norms of practice. Am J Orthopsychiatr 1997. Neidig JR. 28. Norris K. 43. Living in a world without closure: reality for parents who have experienced the death of a child. 27. Pritchard M. 158: 515–520. Toller PW. Srivastava DK. 45. Parent and child perspectives on physician communication in pediatric palliative care. et al. Hepworth JT. et al. Carnevale FA. 26. Howard RJ. 4. et al. Pector EA. 32. LaMontagne LL. 9: 113. Omega J Death Dying 1992. Bosma H. 29. et al. Burghen E. 371(9615): 852–864. Dalgas-Pelish P. Cornell DL. Death Stud 2001. Seecharan GA. life-threatening illness. Murphy BA. 34: 53–58. 32: 49–61. Evan EE. 121: e1301–e1309. J Palliat Care 2006. 36. Koogler TK. J Perinatol 2004. 12: 576–585. Loriz. 22: 75–82. 2006. Arch Pediatr Adolesc Med 2004. 5. Canada: Canadian Hospice Palliative Care Association. Steele R. Davies B. How bereaved multiple-birth parents cope with hospitalization. Issues Comp Pediatr Nurs 1991. Mary Ellen Macdonald had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Widger K. 35. Skipton K. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs 2007. Parents’ reactions to participating in interviews about end-of-life decision making. Fletcher. 25: 51–66. Pediatr Nurs 2008. 42. J Palliat Med 2006. Hendricks-Ferguson VL. Pediatric organ donation: what factors most influence parents’ donation decisions? Pediatr Crit Care Med 2008. Parental grieving and perceptions regarding health care professionals’ interventions. Parental grief responses and personal growth following the death of a child. Picot C. Eur J Oncol Nurs 2006. Omega J Death Dying 1995. Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Frader J. Rodrigue JR. Parental perspectives of initial end-of-life care communication. disposition for deceased. The role of meaning and purpose in life in bereaved parents associated with a self-help group: Compassionate friends. Acknowledgements This research was supported by Social Science and Humanities Research Council Grant #410-2007-0709. Wheeler I. 37. Ontario. Schwab R. Research priorities in pediatric palliative care: a Delphi study. Sharman M. Tomlinson D. Woodgate RL. Bereaved parents and support group participation. Hsiao JL. 14: 179–191. Michelson KN. and attachment to survivors. 39: 303–307.442 pediatric intensive care unit. References 1. Andresen EM. Canadian Hospice Palliative Care Association. Zeltzer LK. homecoming. Parents’ assessment of quality of care and grief following a child’s death. Riley LP. M. L. Liben S. Examining parental communication in pediatric critical care. Crit Care Med 2002. 9: 1329–1338. 31. Pediatr Crit Care Med 2008. 9: 180–185. 284: 2469–2475. 44. Capra M. Wheeler I. 33: 46–66. Lancet 2008. Pediatrics 2008. 38. Palliat Support Care 2007. 24: 714–722. 25. We would like to thank Dr Chris Feudtner for his valuable feedback on this manuscript. Grier HE. . Int J Palliat Nurs 2007. 24: 229–239. Wolfe J. 30. Steele R. 41. 2. J Appl Commun Res 2005. ME Macdonald was supported by a salary award from the CIHR NET: Family Caregiving in Palliative and End of Life Care. Omega J Death Dying 1993–94. discussion 307–308. Death Stud 2007. 33. Traumatic childhood death: how well do parents cope? J Trauma Injury Infection Crit Care 1995. Gammon J. 6: 513–518. Oliver RC. Impact on parents when a child has a progressive. Ponzetti JJ. Parental bereavement: Spiritual connections with deceased children. Fallat ME. Palliative Medicine 24(4) 39. 5: 355–365. Bereaved families: A comparison of parents’ and grandparents’ reactions to the death of a child. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. What influences parents’ decisions to limit or withdraw life support? Pediatr Crit Care Med 2005. Meert KL. Papadatou D. Toce SS. Sullivan C. 25: 63–71. Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input. Sormanti. Negotiation of dialectical contradictions by parents who have experienced the death of a child. August J. 30: 226–231. Wolfe J Klar N. J Palliat Care 2008. 67: 460–469. Sarnaik AP.

8: 181–188. Sawyer SM. 9: 180–185. 28: 111–135. Littlewood JL. 18: 1–22. Bereaved parents’ perspectives on their needs. Foppiano P. Parry C. 34. Sormanti M. gender and ethnicity. 15. Furman W. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Frader J. Qual Health Res 2001. Aroni R. 9: 1329–1338. Death Stud 2004. Meert KL. 26. 30. 34: 53–58. 19: 139–148. Cramer D. 46. Sullivan C. J Palliat Med 2006. London: Routledge. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Levert MJ. Bereaved parents and support group participation. Katz S.ME Macdonald et al. Death and the transformation of gender in image and text. 39. Omega J Death Dying 1993. 22: 77–100. D’Agostino NM. Living in a world without closure: reality for parents who have experienced the death of a child. 13. Arch Pediatr Adolesc Med 2004. 16. London: Routledge. Hynson JL. Small N (eds) Death. IL. Parental bereavement: Levels of grief as affected by gender issues. 6: 33–41. Contro N. Norris K. Ritholz MD. Sarnaik AP. August J. Pelchat D. T. 6: 513–518. Parents’ reactions to participating in interviews about end-of-life decision making. 42. 43. Gallagher SK. 37. Soc Sci Med 2004. Hallam E. 27: 39–61. Research with bereaved parents: a question of how not why. Doucet A. Berlin-Romalis D. Polit DF. Death Stud 1994. Schwab R. (Ed. Sumner L. Comm Work Fam 2000. 31: 417–427. Fathers’ Perspectives on the treatment for pediatric hematology: Extending the findings. When the child’s illness is life threatening: impact on the parents. 24: 1523–1528. PA: Brunner/Mazel. Men don’t cry—women do: transcending gender stereotypes of grief. 11: 363. 41. 443 25. Men’s caregiving: Gender and the contingent character of care. 28. Quargnenti A. Dudmundsdottir M. Field D. Brenner P. Meert KL. Wheeler I. Pediatr Crit Care Med 2000. Meert KL. 1997. Hockey J. 32: 49–61. Meyer EC. 40. Burton L. J Fam Ther 1996. 20: 103–113. 21.A. 29. Palliat Support Care 2008. J Child Health Care 2007. 156: 14–19. Cook J. Women in grief: cultural representation and social practice. Pediatr Nurs 2002. Bauld C. Gerstel N. Gender differences and similarities in the experience of parenting a child with a health problem: current state of knowledge. Humphrey GB. USA: Research Press Company. Being a man about it: The marginalization of men in grief. 31. Hockey J. Omega J Death Dying 1992. In: Field D. Braun MJ. Woodgate RL. 67: 460–469. 44. [see comment]. Pediatrics 2006. Parental bereavement: Spiritual connections with deceased children.108–123. Barrera M. Beck CT. 38. Champaign. Am J Orthopsychiatr 1997. 3: 163–184. 1986. Chesler M. Widger K. End-of-life decision-making and satisfaction with care: Parental perspectives. 1: 179. 9: 2–7. Seecharan GA. Jovcevska V. Brown KAE. Gender differences in parenting a child with cancer. Hockey JL. Worden B. In: Field D. 22: 75–82. Eggly S. Sourkes B. Pollack M. 58: 391–400. Omega J Death Dying 1999. Orloff S. Small N (eds) . Influence of gender on the problems of parents of fatally ill children. 22: 53–71. 40: 351–374. Pediatr Crit Care Med 2008. 117: 649–657. Koogler TK. domestic responsibility. 32. Oakes L. 12. Hoekstra J. The role of meaning and purpose in life in bereaved parents associated with a self-help group: compassionate friends. Illness Crisis Loss 2000. Dyregrov K. 22. Toce SS. 20: 805. J Psychosoc Oncol 1984. Bereaved parents’ experience of research participation. Health disparities among men from racial and ethnic minority populations. 35. Thurston CS. ’An intimate loneliness’: evaluating the impact of a child’s death on parental self-identity and marital relationships. 24. 7. p. Palliat Med 2006. Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Oncology Nursing Forum 1997. Pediatr Crit Care Med 2008. Rodrigue JR. Omega J Death Dying 1995. Cohen H. The inner representation of the dead child and the worldviews of bereaved parents. Barbarin OA. 15: 197–217. Death Stud 1996. 28: 261–271. 18. Lefebvre H. gender and ethnicity. 11. Zinner ES. Sarnaik AP. Rando. 9. There’s a huge gulf between me as a male carer and women: gender. Gender Soc 2001. 17. Sharman M. 33. Dallas C. 28: 453–464. 1997. 11: 112. 158: 515–520. 2000. Picot C. Howard RJ. Dawson P. Pediatric organ donation: what factors most influence parents’ donation decisions? [see comment]. Burns JP. Annu Rev Nurs Res 2004. 26: 255–272. 2: 71–91. 27. Issues Compr Pediatr Nurs 2004. Skipton K. Larson J. Br J Guid Counc 1991. Arch Pediatr Adolesc Med 2002. 23. Meaning reconstruction in the experience of parental bereavement. Hinds PS. 36. Gender roles and/or styles in crisis: An integrative analysis of the experiences of fathers of children with cancer. et al. Philadelphia. Family perspectives on the quality of pediatric palliative care. 18: 105–129. Soc Work Health Care 1996. Small N. Parents’ assessment of quality of care and grief following a child’s death. Is there gender bias in nursing research? Res Nurs Health 2008. ‘‘Living in the dragon’s shadow’’: Fathers’ experiences of a child’s life-limiting illness. Gender differences in parental grief. Truog RD. Martin T. 20. Berg DH. Klass D. 10. Olson M S.) Parental Loss of a Child. Scofield S. and the community as an institutional arena. Hockey J. What influences parents’ decisions to limit or withdraw life support? Pediatr Crit Care Med 2005. Davies B. Schwab R. 45. McGrath P. Gender differences in parental coping following their child’s death. 19. Andresen EM. Cornell DL. Sidmore KV. Michelson KN. Doka KJ. 8. Death. Chesler MA. Riches G. 14. et al. J Palliat Care 2006. Pediatr Nurs 2008.

Hawkins AJ. Lohan J. Allen SM. 23: 161–166. In: Field D. The consequences of caring: Effects of mothering a child with special needs. and written correlates of expressiveness. and community resources 4 to 60 months after a child’s violent death. gender ideologies. Rochlen AB. The therapeutic approach to the child with feeding difficulty: II. (Eds. Hurst MA. . B. Poetry and photography: An exploration into expressive/creative qualitative research. Gaunt R. J Mens Stud 2001. 5: 190–200. 4: 135–156.76–88. London. S. Langer C. (1996). 61: 199–212. 140. Masculinity and Loss. Image J Nurs Sch 1991. Wells N. 48. Danos KK. 56. Sandelowski M. Biological essentialism. Lin CW. 1997. 22: 162–170. 55: 523–533. The (un)emotional male: Physiological. 1997. gender and ethnicity. Woodford J. Thompson N. gender and ethnicity. London: Routledge. Sex Roles 2006. 50. 54. 25: 379. 47. Johnson L. Fam Syst Health 2004.444 Death. 9: 393–412. Krauss MW. Palliative Medicine 24(4) 52. Wong YJ. Using poetry and narrative as qualitative data: Exploring a father’s cancer through poetry. In P. Furman R. Szto P. J Fam Comm Health 2002. Murphy S.89–107. Small N (eds) Death. and role attitudes: What determines parents’ involvement in child care. Sullivan & L. Rosenbloom. Tapper V. 51. Feeding the Disabled Child (pp.). Leiter V. Telling stories: Narrative approaches in qualitative research. Clinics in Developmental Medicine No. p. 57. Hockey J. R. London: Routledge. Maternal gatekeeping: Mothers’ beliefs and behaviors that inhibit greater father involvement in family work. Robertson JM. Carroll. Bereaved parents’ use of individual. 25: 71–82. 55. Qual Soc Work 2005. p. Psychol Men Masc 2004. J Fam Issues 2004. & Reilly. Land LN. Management and treatment. UK: MacKeith Press. Furman R. 49. family. verbal. Male restrictive emotionality and evaluations of online versus face-to-face counseling. J Marriage Fam 1999. 53. 117–132). Anderson B.

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