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Original Article

Palliative Medicine
24(4) 435–444
Gender imbalance in pediatric palliative ! The Author(s) 2010
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DOI: 10.1177/0269216309354396
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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
perceptions of quality of end-of-life care,20–23 and
Pediatric palliative care is a growing field of health care even parents’ experiences of research participation.24–26
specialization and research.1,2 A key aspect of improv- Parental perspectives research is, however, prone to
ing palliative care services for children is understanding certain logistical and ethical challenges. One key meth-
the values and needs of the child’s parents.3 In an odological difficulty is in the area of sampling. In psy-
attempt to effectively integrate parents in pediatric chosocial research in general, research samples tend to
end-of-life care and treatment, psychosocial research include more women than men.27–29 While the majority
is increasingly focusing on parental experiences and of children have both a mother and a father involved in
perspectives, including on bereavement. As a result, some capacity in their care, even the most cursory
‘parental perspectives’ research has become a popular examination of pediatric palliative care literature sug-
category in many areas of pediatric palliative care. Both gests that fathers are much less present in research sam-
qualitative and quantitative research has been ples than mothers. Gender differences are relevant to
conducted, covering areas of concern such as commu- many areas of parenting,30 including parenting a child
nication,4–7 decision-making,8–11 bereavement,12–19 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
436 Palliative Medicine 24(4)

Table 1. Keyword search terms

Database (Host) Search Terms Limitations Results

Medline (Ovid) 1) ‘Parent’ (focus, explode, keyword) English language 865


or ‘parent-child relations’ or ‘family’ AND Years: 1988–2008
2) ‘Palliative care’ or ‘terminal care’ or Research Articles
‘hospice care’ or ‘bereavement’
(explode to include ‘grief’) or ‘hospitals, pediatrics’
or ‘pediatric palliative care’ (keyword)
PsycINFO (a) (Ovid) 1) ‘Parents’ (focus, explode) or ‘family’ English language 615
(explode) or ‘parent-child relations’ AND Years: 1988–2008
2) ‘Palliative care’ (explode) or ‘terminally ill patients’ Peer Reviewed
(explode) or ‘grief’ (explode) or ‘hospice’ or
‘pediatric palliative care’ (keyword)
PsycINFO (b) (Ovid) Key concept terms: ‘bereaved parent’ (n ¼ 109), None 249
‘child death’ (n ¼ 79), ‘child’s death’ (n ¼ 39), and
‘parental grief’ (n ¼ 22)
CINAHL (EBSCO) 1) ‘Parents’ (explode) or ‘parental attitudes’ English language 720
(explode) or ‘parent-child relations’ Years: 1988–2008
(explode) AND Journal Articles
2) ‘Terminal care’ or Peer Reviewed
‘hospice care’ or ‘palliative care’ or Research Articles
‘intensive care units, pediatric’ (explode) or
‘bereavement’ (explode to include ‘grief’) or
‘attitudes to death’ or ‘anticipatory grieving’
– 346 duplicates

Imbalanced research samples preclude a careful analy- Two graduate students (GC and WA) independently
sis of these differences. examined the resultant 2103 articles, selecting only
We therefore sought to examine, and thereby those fitting all of the following inclusion criteria:
potentially help to correct, this gender imbalance. (a) conducted in North America; (b) focused on
As a first step, the objective of this study was to parents of children aged 0–18 years (excluding perinatal
assess the sampling performance of research on paren- loss); (c) focused on parents of children who were
tal perspectives in pediatric palliative care and to exam- expected to die or had died; (d) had truncated
ine if and how this bias was treated in study analysis ‘parent’ in the title of the article (e.g. parent, parents,
and findings. parental, parenting etc); (d) focused on parents’ experi-
ences with a dying child (excluding articles specifically
about children who died suddenly/unexpectedly, e.g. to
Methods suicide, murder, sudden infant death syndrome);
This project was part of a larger national study on the and (e) focused on parents’ perspectives regarding
socio-cultural aspects of parental bereavement in the child’s illness/death (e.g. not on outcomes regarding
Canada funded by the Social Science and Humanities parental health).
Research Council of Canada, and approved by the In total, 45 articles were retrieved (see the
McGill University Institutional Review Board. The Appendix). Research methods and samples of all 45
goal of this study was to quantify the asymmetric rep- articles were analyzed, focusing on the ratio of mothers
resentation of mothers and fathers in pediatric pallia- to fathers participating in the studies, with attention to
tive care research on parental perspectives. To begin, these ratios in study findings. See Table 2 for results.
we performed a systematic review of research studies on
parental perspectives in pediatric palliative care
research using three databases (MEDLINE, Results
CINAHL, and PsycINFO). Research parameters
Increase in parental perspectives research
demanded that articles include empirical research, be
published in English, and describe research conducted An unanticipated result of this systematic review was
between 1988–2008. Keyword ‘Search Terms’ are out- that it demonstrated an increase in research on paren-
lined in Table 1. tal perspectives in pediatric palliative care over the
ME Macdonald et al. 437

Table 2. Total mothers, fathers, parents, % mothers, by article, by year

Article #
(see corresponding
YEAR bibliography in Appendix) # Fathers # Mothers Total Parents % Mothers

1988
1989
1990
1991 26 3 18 21 86%
1992 13 n/a n/a n/a n/a
29 15 21 36 58%
1993
1994 42 45 158 203 78%
1 0 10 10 100%
6 39 39 78 50%
1995 27 10 19 29 66%
34 n/a n/a n/a n/a
1996
1997 10 n/a n/a n/a n/a
12 3 5 8 62.5%
37 9 34 43 79%
1998
1999
2000 22 9 69 78 88%
44 14 89 103 86%
2001 9 15 75 90 83%
41 39 137 176 78%
2002 5 n/a n/a n/a n/a
24 20 36 56 64%
2003 2 110 152 262 58%
2004 28 4 66 70 94%
35 19 59 78 75%
2005 7 10 23 33 70%
16 4 8 12 67%
18 24 120 144 83%
21 12 20 32 62.5%
36 5 9 14 64%
39 4 12 16 75%
2006 15 4 8 12 67%
23 20 36 56 64%
25 15 55 70 79%
38 n/a n/a n/a n/a
40 2 4 6 67%
45 11 17 28 61%
2007 4 10 18 28 64%
8 9 19 28 68%
11 1 17 18 94%
14 0 12 12 100%
17 41 153 194 79%
20 17 39 56 70%
(continued)
438 Palliative Medicine 24(4)

Table 2. Continued

Article #
(see corresponding
YEAR bibliography in Appendix) # Fathers # Mothers Total Parents % Mothers

31 0 35 35 100%
32 2 9 11 82%
2008 3 2 5 7 71%
19 17 39 56 70%
30 4 48 52 92%
33 12 62 74 84%
43 3 36 39 92%

last 5 years (Figure 1). In our sample of 45 articles from


1988–2008, 62% (n ¼ 28) were published between 2003
and 2008.

‘Parent’ as synonymous with mother 30


25 28
Research samples: While there is increasing research # Articles
20
on ‘parental perspectives’, what constitutes ‘parental’ in
15
this literature continues to be primarily ‘maternal’.
10
Across the years 1988–2008, the 45 articles in our
sample relied on the participation of 2374 parents, 5 8
6
0 3
1791 (75%) of whom were mothers, and 583 (25%) of
1988–1992 1993–1997 1998–2002 2003–2008
whom were fathers (Figure 2).
In our sample, the percentage of mothers ranged Year of publication
from 50–100% of research samples, whereas the per-
centage of fathers ranged from 0–50%; 40% of the Figure 1. Number of published studies by publication year.

100
90
80
70
mothers : fathers
Percentage

60
50
40
30
20
10
0
1991

1992

1993

1994

1995

1996

1997
1998

1999

2000

2001

2002

2003

2004

2005

2006

2007
2008

Overall average

Publication year

Fathers
Mothers

Figure 2. Percentage of mothers and fathers in published studies, by publication year.


ME Macdonald et al. 439

articles were based on samples with more than 75% response to one question between mothers and fathers).
mothers, and 42% of the articles had samples with In only four studies was the gender imbalance
less than 25% fathers. Three of the articles were addressed as one of the limitations to the study.
based on samples with 100% mothers and five articles
did not provide a gender ratio breakdown.
Discussion
One article did have equal representation of mothers
and fathers; interestingly, this was based on a study of Mothering and fathering can involve different and
couples. While many of the other articles included cou- varied roles, responsibilities, societal expectations and
ples, it was often not clear exactly how the couples physical requirements.30 For example, men and women
participated in the research (e.g. together as a couple, are expected, encouraged, and permitted to grieve and
or separately as individuals). Of 45 articles, 12 explicitly care for the dying in gendered ways.37–47 Literature
mentioned couples in the data, but complete details shows how gendered expectations and experiences of
were not provided on how exactly the couple contrib- both parenthood and bereavement simultaneously
uted to the sampling (e.g. number of couples in the shape the needs, health-seeking behaviors and abilities
sample; whether the couples participated individually of bereaved mothers and fathers to access support, seek
in interviews or together). Of the articles that did treatment or effectively utilize available health and
include couples and that did provide full details social policies.28,42,48 Our review suggests research on
(n ¼ 19), 34 couples participated as couples, whereas ‘parental perspectives’ in pediatric palliative care has
416 individuals from 208 couples participated as indi- become increasingly popular, especially in the last 5
viduals. Interestingly, if all known couples, regardless years. While this increase is important for the advance-
of how they participated in the studies (e.g. together or ment of the field, our review also suggests that research-
separate) are removed from the data set, the overall ers are uncritically using the term ‘parent’ to describe
ratio of mothers to fathers is even more dramatic, participant samples that rarely have equal representa-
with 84% of the sample being mothers and 16% fathers tion of fathers and mothers. While 75% of research
(See Table 3). samples of ‘parents’ are actually mothers, and despite
Of our 45 articles, five did not describe the gender of the fact that gender shapes experiences of parenting,
participants. Of the remaining 40 articles, 23 used qual- researchers are failing to include a careful analysis of
itative methods, 11 used quantitative methods, and six this gender imbalance in research results. In addition,
used mixed methods. Table 3 provides a breakdown of journal editors and reviewers have not required
gender ratios by study methods. researchers to acknowledge the gender imbalance in
their sample and, at a minimum, address this as a
Research analysis: In the majority of articles, there limitation.
was no explicit reference to the sampling imbalance in While this article is the first to quantify this bias, our
the study findings. In 34 of the articles, there was no results are not surprising. Polit and Beck discovered an
mention of the sampling imbalance, and no gender ana- identical imbalanced ratio of women to men in their
lysis was performed. In seven studies, while the gender review of general nursing research.27 Further, research-
imbalance was not addressed, some gender differences ers in palliative care have been aware of this bias
were discussed in the analysis (e.g. a difference in for many years. For example, Chesler and Parry28

Table 3. Gender ratios by study method

Qualitative Quantitative Mixed Methods All Articles


n ¼ 23 n ¼ 11 n¼6 n ¼ 40
studies studies studies studies

Including
Couples:
Mothers 73% (578) 78% (898) 82% (315) 75% (1791)
Fathers 28% (211) 22% (311) 18% (61) 25% (583)
Excluding
Couples:
Mothers 82% (199) 82% (747) 94% (221) 84% (1167)
Fathers 18% (44) 18% (160) 6% (15) 16% (219)
440 Palliative Medicine 24(4)

wrote that fathers’ voices were under-represented in the experiences through photographic images and then
literature. While perhaps not unexpected, there are seri- invited to speak about the photos.55 When using narra-
ous implications of this bias for clinical practice: by tives, participants are encouraged to reflect and write
over-representing mothers and under-representing about their experiences in a solitary environment and
fathers, this research runs the risk of reinforcing the then share the writing with a researcher.56 Literary
social assumption that mothers are necessarily the pri- forms such as poetry57 or artistic forms such as wood
mary caregivers of children, while simultaneously mar- carving can enable some participants to convey emo-
ginalizing men’s parenting, caregiving and bereavement tional experiences that they may have difficulty fitting
experiences, which in combination may inadvertently in the confines of ordinary language. Research also
result in the creation of gender-biased interventions. suggests that men tend towards a more instrumental
The findings of this study suggest areas for future style of grieving, with a focus on concrete problem sol-
research. A starting point would be addressing why ving.38 Therefore, when recruiting fathers, researchers
this imbalance exists in palliative care research. We might consider emphasizing the health and social ben-
believe that looking closely at data collection methods efits the study hopes to have for other parents; this is a
– both qualitative and quantitative, according to our way to emphasize the concrete utility of fathers’
findings – is an important place to start. As in any contributions.
research project, recruiting and sampling must be Finally, attempts to accommodate gender differences
adapted to the needs of the research participants. It is in research always run the risk of further reinforcing
possible that recruiting mothers for research addressing gender assumptions and stereotypes. Researchers must
childhood illness, end-of-life care, death and bereave- be attentive to the nuances and complexities of gender
ment has been more successful than fathers because the identities and roles; not all parents will identify with or
recruitment strategies and data collection methods are conform to gender patterns, which also vary
more mother-friendly. For example, recruitment that cross-culturally.
proceeds with a phone call to the family home may
be more likely to reach mothers. Further, mothers are
often more likely than fathers to play the role of
Limitations
spokesperson or gatekeeper for the family.49,50 It has The parameters we used in conducting our search of the
also been suggested in the literature that data collection published literature constitute the principal limitation of
via interview methods may be more conducive to this study. Our focus was on English articles from North
women’s styles of communication.51,52 Research that America with the word ‘parent’ in the title; we imposed
requires the participant to come to the hospital to com- these limitations in order to create a manageable data
plete a questionnaire or interview may be more success- set. While expanding the data to include articles from
ful with mothers, who are more likely to accompany the outside of North America and in other languages would
child to the clinic because their work situations are increase our data, our knowledge of the field of pediatric
often more flexible than those of fathers.53,54 Our find- palliative care suggests that it would not substantially
ings suggest that proactively including couples in change our research findings. A more substantial limita-
research sampling may be one way to increase the par- tion, however, is that all articles that specifically focused
ticipation of fathers. on mothers or fathers would have been excluded from
Gender socialization theory suggests that men are our sampling if they used ‘mother’ or ‘father’ or ‘couple’
socialized into a more non-verbally expressive manner in the title, and not ‘parent’. While this research would
than women; as such, the expression of emotions is be interesting to analyze, it does not change the finding
often seen as inappropriate for men. The idea of shar- that many researchers are using the term ‘parent’ to gloss
ing personal feelings and experiences with others – par- imbalanced samples.
ticularly strangers, as researchers most often are – may
be uncomfortable for many fathers. To contend with
Conclusion
this socialization, there are a number of strategies that
researchers can employ to increase the recruitment of Amidst the growing interest in research on parental per-
fathers. For example, there are research methods that spectives in pediatric palliative care, research claiming to
do not rely solely on verbal articulation and provide ‘parental perspectives’ does not equally reflect the
face-to-face interaction that may be more conducive experiences and needs of mothers and fathers. The deficit
to authentically representing male expression, as well in the numbers of fathers in studies suggests that we need to
as encouraging fathers who might be dissuaded by the be circumspect in drawing conclusions and building inter-
anticipation of having to talk about their emotional ventions based on study findings to date. Given how pro-
experiences. Such methods include photovoice, for foundly gender can shape experiences of both parenthood
which participants are asked to represent their and grief, balanced gender sampling and accurate analysis
ME Macdonald et al. 441

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

pediatric intensive care unit. Crit Care Med 2002; 39. Toller PW. Negotiation of dialectical contradic-
30: 226–231. tions by parents who have experienced the death
25. Michelson KN, Koogler TK, Skipton K, Sullivan of a child. J Appl Commun Res 2005; 33: 46–66.
C, Frader J. Parents’ reactions to participating in 40. Tomlinson D, Capra M, Gammon J, et al.
interviews about end-of-life decision making. J Parental decision making in pediatric cancer
Palliat Med 2006; 9: 1329–1338. end-of-life care: using focus group methodology
26. Neidig JR, Dalgas-Pelish P. Parental grieving and as a prephase to seek participant design input.
perceptions regarding health care professionals’ Eur J Oncol Nurs 2006; 10: 198–206.
interventions. Issues Comp Pediatr Nurs 1991; 14: 41. Wheeler I. Parental bereavement: The crisis of
179–191. meaning. Death Stud 2001; 25: 51–66.
27. Oliver RC, Fallat ME. Traumatic childhood 42. Wheeler I. The role of meaning and purpose in life
death: how well do parents cope? J Trauma in bereaved parents associated with a self-help
Injury Infection Crit Care 1995; 39: 303–307; dis- group: Compassionate friends. Omega J Death
cussion 307–308. Dying 1993–94; 28: 261–271.
28. Pector EA. How bereaved multiple-birth parents 43. Widger K, Picot C. Parents’ perceptions of the
cope with hospitalization, homecoming, disposi- quality of pediatric and perinatal end-of-life care.
tion for deceased, and attachment to survivors. Pediatr Nurs 2008; 34: 53–58.
J Perinatol 2004; 24: 714–722. 44. Wolfe J Klar N, Grier HE, et al. Understanding of
29. Ponzetti JJ. Bereaved families: A comparison of prognosis among parents of children who died of
parents’ and grandparents’ reactions to the cancer: impact on treatment goals and integration
death of a child. Omega J Death Dying 1992; 25: of palliative care. JAMA 2000; 284: 2469–2475.
63–71. 45. Woodgate RL. Living in a world without closure:
30. Pritchard M, Burghen E, Srivastava DK, et al. reality for parents who have experienced the death
Cancer-related symptoms most concerning of a child. J Palliat Care 2006; 22: 75–82.
to parents during the last week and last
day of their child’s life. Pediatrics 2008; 121:
e1301–e1309. Acknowledgements
31. Riley LP, LaMontagne LL, Hepworth JT, This research was supported by Social Science and
Murphy BA. Parental grief responses and personal Humanities Research Council Grant #410-2007-0709; ME
growth following the death of a child. Death Stud Macdonald was supported by a salary award from the
2007; 31: 277–299. CIHR NET: Family Caregiving in Palliative and End of
32. Rini A, Loriz, L. Anticipatory mourning in par- Life Care. We would like to thank Dr Chris Feudtner for
ents with a child who dies while hospitalized. his valuable feedback on this manuscript. Mary Ellen
J Pediatr Nurs 2007; 22: 272–282. Macdonald had full access to all the data in the study and
33. Rodrigue JR, Cornell DL, Howard RJ. Pediatric takes responsibility for the integrity of the data and the accu-
racy of the data analysis.
organ donation: what factors most influence par-
ents’ donation decisions? Pediatr Crit Care Med
2008; 9: 180–185. References
34. Schwab R. Bereaved parents and support group 1. Liben S, Papadatou D, Wolfe J. Paediatric palliative care:
participation. Omega J Death Dying 1995; 32: challenges and emerging ideas. Lancet 2008; 371(9615):
49–61. 852–864.
35. Seecharan GA, Andresen EM, Norris K, Toce SS. 2. Steele R, Bosma H, Fletcher, et al. Research priorities in
Parents’ assessment of quality of care and grief pediatric palliative care: a Delphi study. J Palliat Care
following a child’s death. Arch Pediatr Adolesc 2008; 24: 229–239.
Med 2004; 158: 515–520. 3. Canadian Hospice Palliative Care Association. Pediatric
36. Sharman M, Meert KL, Sarnaik AP. palliative care: guiding principles and norms of practice.
What influences parents’ decisions to limit or with- Ontario, Canada: Canadian Hospice Palliative Care
Association, 2006.
draw life support? Pediatr Crit Care Med 2005; 6:
4. Carnevale FA. Examining parental communication in
513–518.
pediatric critical care. Pediatr Crit Care Med 2008; 9: 113.
37. Sormanti, M, August J. Parental bereavement: 5. Hendricks-Ferguson VL. Parental perspectives of initial
Spiritual connections with deceased children. end-of-life care communication. Int J Palliat Nurs 2007;
Am J Orthopsychiatr 1997; 67: 460–469. 13: 522–531.
38. Steele R, Davies B. Impact on parents when a 6. Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspec-
child has a progressive, life-threatening illness. tives on physician communication in pediatric palliative
Int J Palliat Nurs 2006; 12: 576–585. care. Palliat Support Care 2007; 5: 355–365.
ME Macdonald et al. 443

7. Meert KL, Eggly S, Pollack M, et al. Parents’ perspec- 25. Dyregrov K. Bereaved parents’ experience of research
tives on physician-parent communication near the time of participation. Soc Sci Med 2004; 58: 391–400.
a child’s death in the pediatric intensive care unit. 26. Hynson JL, Aroni R, Bauld C, Sawyer SM. Research
[see comment]. Pediatr Crit Care Med 2008; 9: 2–7. with bereaved parents: a question of how not why.
8. Meert KL, Thurston CS, Sarnaik AP. End-of-life Palliat Med 2006; 20: 805.
decision-making and satisfaction with care: Parental per- 27. Polit DF, Beck CT. Is there gender bias in nursing
spectives. Pediatr Crit Care Med 2000; 1: 179. research? Res Nurs Health 2008; 31: 417–427.
9. Rodrigue JR, Cornell DL, Howard RJ. Pediatric organ 28. Chesler MA, Parry C. Gender roles and/or styles in crisis:
donation: what factors most influence parents’ donation An integrative analysis of the experiences of fathers of
decisions? [see comment]. Pediatr Crit Care Med 2008; 9: children with cancer. Qual Health Res 2001; 11: 363.
180–185. 29. Dallas C, Burton L. Health disparities among men from
10. Sharman M, Meert KL, Sarnaik AP. What influences racial and ethnic minority populations. Annu Rev Nurs
parents’ decisions to limit or withdraw life support? Res 2004; 22: 77–100.
Pediatr Crit Care Med 2005; 6: 513–518. 30. Doucet A. There’s a huge gulf between me as a male carer
11. Hinds PS, Oakes L, Furman W, Foppiano P; Olson M S; and women: gender, domestic responsibility, and the
Quargnenti A, et al. Decision making by parents and community as an institutional arena. Comm Work Fam
healthcare professionals when considering continued 2000; 3: 163–184.
care for pediatric patients with cancer. Oncology 31. Katz S. When the child’s illness is life threatening: impact
Nursing Forum 1997; 24: 1523–1528. on the parents. Pediatr Nurs 2002; 28: 453–464.
12. Rando, T.A. (Ed.) Parental Loss of a Child. 1986. 32. Pelchat D, Lefebvre H, Levert MJ. Gender differences
Champaign, IL, USA: Research Press Company. and similarities in the experience of parenting a child
13. Braun MJ, Berg DH. Meaning reconstruction in the with a health problem: current state of knowledge.
experience of parental bereavement. Death Stud 1994; J Child Health Care 2007; 11: 112.
18: 105–129. 33. McGrath P, Chesler M. Fathers’ Perspectives on the
14. D’Agostino NM, Berlin-Romalis D, Jovcevska V, treatment for pediatric hematology: Extending the find-
Barrera M. Bereaved parents’ perspectives on their ings. Issues Compr Pediatr Nurs 2004; 27: 39–61.
needs. Palliat Support Care 2008; 6: 33–41. 34. Brown KAE, Barbarin OA. Gender differences in parenting
15. Klass D. The inner representation of the dead child and a child with cancer. Soc Work Health Care 1996; 22: 53–71.
the worldviews of bereaved parents. Omega J Death 35. Cook J. Influence of gender on the problems of parents of
Dying 1992; 26: 255–272. fatally ill children. J Psychosoc Oncol 1984; 2: 71–91.
16. Sormanti M, August J. Parental bereavement: Spiritual 36. Davies B, Dudmundsdottir M, Worden B, Orloff S,
connections with deceased children. Am J Orthopsychiatr Sumner L, Brenner P. ‘‘Living in the dragon’s shadow’’:
1997; 67: 460–469. Fathers’ experiences of a child’s life-limiting illness.
17. Woodgate RL. Living in a world without closure: reality Death Stud 2004; 28: 111–135.
for parents who have experienced the death of a child. 37. Hallam E. Death and the transformation of gender in
J Palliat Care 2006; 22: 75–82. image and text. In: Field D, Hockey J, Small N (eds)
18. Wheeler I. The role of meaning and purpose in life in Death, gender and ethnicity. London: Routledge, 1997,
bereaved parents associated with a self-help group: com- p.108–123.
passionate friends. Omega J Death Dying 1993; 28: 38. Martin T, Doka KJ. Men don’t cry—women do: trans-
261–271. cending gender stereotypes of grief. Philadelphia, PA:
19. Schwab R. Bereaved parents and support group partici- Brunner/Mazel, 2000.
pation. Omega J Death Dying 1995; 32: 49–61. 39. Riches G, Dawson P. ’An intimate loneliness’: evaluating
20. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. the impact of a child’s death on parental self-identity and
Family perspectives on the quality of pediatric palliative marital relationships. J Fam Ther 1996; 18: 1–22.
care. Arch Pediatr Adolesc Med 2002; 156: 14–19. 40. Littlewood JL, Cramer D, Hoekstra J, Humphrey GB.
21. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving Gender differences in parental coping following their
the quality of end-of-life care in the pediatric intensive child’s death. Br J Guid Counc 1991; 19: 139–148.
care unit: parents’ priorities and recommendations. 41. Field D, Hockey JL, Small N. Death, gender and ethni-
Pediatrics 2006; 117: 649–657. city. London: Routledge, 1997.
22. Seecharan GA, Andresen EM, Norris K, Toce SS. 42. Schwab R. Gender differences in parental grief. Death
Parents’ assessment of quality of care and grief following Stud 1996; 20: 103–113.
a child’s death. Arch Pediatr Adolesc Med 2004; 158: 43. Zinner ES. Being a man about it: The marginalization of
515–520. men in grief. Illness Crisis Loss 2000; 8: 181–188.
23. Widger K, Picot C. Parents’ perceptions of the quality of 44. Gerstel N, Gallagher SK. Men’s caregiving: Gender and the
pediatric and perinatal end-of-life care. Pediatr Nurs contingent character of care. Gender Soc 2001; 15: 197–217.
2008; 34: 53–58. 45. Sidmore KV. Parental bereavement: Levels of grief as
24. Michelson KN, Koogler TK, Skipton K, Sullivan C, affected by gender issues. Omega J Death Dying 1999;
Frader J. Parents’ reactions to participating in interviews 40: 351–374.
about end-of-life decision making. J Palliat Med 2006; 9: 46. Hockey J. Women in grief: cultural representation and
1329–1338. social practice. In: Field D, Hockey J, Small N (eds)
444 Palliative Medicine 24(4)

Death, gender and ethnicity. London: Routledge, 1997, 52. Rochlen AB, Land LN, Wong YJ. Male restrictive emo-
p.89–107. tionality and evaluations of online versus face-to-face
47. Thompson N. Masculinity and Loss. In: Field D, Hockey counseling. Psychol Men Masc 2004; 5: 190–200.
J, Small N (eds) Death, gender and ethnicity. London: 53. Carroll, R. & Reilly, S. (1996). The therapeutic approach
Routledge, 1997, p.76–88. to the child with feeding difficulty: II, Management and
48. Murphy S, Johnson L, Lohan J, Tapper V. Bereaved treatment. In P. B. Sullivan & L. Rosenbloom, (Eds.),
parents’ use of individual, family, and community Clinics in Developmental Medicine No. 140. Feeding
resources 4 to 60 months after a child’s violent death. the Disabled Child (pp. 117–132). London, UK:
J Fam Comm Health 2002; 25: 71–82. MacKeith Press.
49. Allen SM, Hawkins AJ. Maternal gatekeeping: Mothers’ 54. Leiter V, Krauss MW, Anderson B, Wells N. The con-
beliefs and behaviors that inhibit greater father invol- sequences of caring: Effects of mothering a child with
vement in family work. J Marriage Fam 1999; 61: special needs. J Fam Issues 2004; 25: 379.
199–212. 55. Szto P, Furman R, Langer C. Poetry and photography:
50. Gaunt R. Biological essentialism, gender ideologies, and An exploration into expressive/creative qualitative
role attitudes: What determines parents’ involvement in research. Qual Soc Work 2005; 4: 135–156.
child care. Sex Roles 2006; 55: 523–533. 56. Sandelowski M. Telling stories: Narrative approaches in
51. Robertson JM, Lin CW, Woodford J, Danos KK, Hurst qualitative research. Image J Nurs Sch 1991; 23: 161–166.
MA. The (un)emotional male: Physiological, verbal, and 57. Furman R. Using poetry and narrative as qualitative
written correlates of expressiveness. J Mens Stud 2001; 9: data: Exploring a father’s cancer through poetry.
393–412. Fam Syst Health 2004; 22: 162–170.
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